SPINAL CORD INJURY REHABILITATION EVIDENCE: Version 2.0 www.icord.

org/scire

CHAPTER TWENTY-FIVE
Outcome Measures
William C Miller, PhD, OT Jo-Anne L Aubut, BA Armin Curt, MD, FRCPC Sandra J Connolly, BHScOT Stacy Elliott, MD Jane TC Hsieh, MSc William B Mortenson, MSc, BScOT Vanessa K Noonan, MSc, BScPT Luc Noreau, PhD Steven G Orenczuk, PhD Brodie M Sakakibara, BSc Bonita Sawatzky, PhD John Steeves, PhD Shannon Wilkinson, BScOT Dalton L Wolfe, PhD

Table of Contents
25.1 Introduction ..................................................................................................................25-1 Introduction References.........................................................................................................25-9 25.2 Body Function / Structure .........................................................................................25-11 25.2.1 Mental Functions & Structures of the Nervous System..............................................25-13 25.2.1.1 Beck Depression Inventory (BDI) ...........................................................................25-13 25.2.1.2 Brief Symptom Inventory (BSI) ...............................................................................25-14 25.2.1.3 The CAGE Questionnaire.......................................................................................25-15 25.2.1.4 Center for Epidemiological Studies Depression Scale (CES-D)..............................25-16 25.2.1.5 Depression Anxiety Stress Scale-21 (DASS-21) ....................................................25-17 25.2.1.6 Fatigue Severity Scale (FSS) .................................................................................25-18 25.2.1.7 The Scaled General Health Questionnaire-28 (GHQ-28):.......................................25-19 25.2.1.8 The Hospital Anxiety and Depression Scale (HADS)..............................................25-20 25.2.1.9 Patient Health Questionnaire (PHQ-9) ...................................................................25-21 25.2.1.10 The Symptom Checklist -90-Revised (SCL-90-R): ...............................................25-22 25.2.1.11 Zung Self-Rating Depression Scale (SDS) ...........................................................25-23 25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures.........................25-24 25.2.2.1 Classification System for Chronic Pain in SCI ........................................................25-24 25.2.2.2 Donovan SCI Pain Classification System ...............................................................25-25 25.2.2.3 Tunks Classification Scheme ................................................................................25-26 25.2.2.4 Wheelchair Users Shoulder Pain Index (WUSPI) ...................................................25-27 25.2.3 Functions & Structures of the Cardiovascular, Haematological, Immunological and Respiratory Systems .............................................................................................25-28 25.2.3.1 Six-Minute Arm Test (6-MAT).................................................................................25-28 25.2.3.2 Wingate Anaerobic Testing (WAnT) .......................................................................25-29 25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures.....................25-30 25.2.4.1 The American Spinal Injury Association: International Standards for Neurological Classification of Spinal Cord Injury ..........................................................................25-30 25.2.4.2 Ashworth and Modified Ashworth ...........................................................................25-31 25.2.4.3 Penn Spasm Frequency Scale (PSFS) ..................................................................25-32 25.2.4.4 Surface Electromyography (sEMG) ........................................................................25-33 25.2.5 Functions of the Skin and Related Structures............................................................25-34 25.2.5.1 Abruzzese Scale ....................................................................................................25-34 25.2.5.2 Braden Scale .........................................................................................................25-35 25.2.5.3 Gosnell Measure ....................................................................................................25-36 25.2.5.4 Norton Measure .....................................................................................................25-37 25.2.5.5 Spinal Cord Injury Pressure Ulcer Scale (SCIPUS) Measure .................................25-38 25.2.5.6 Spinal Cord Injury Pressure Ulcer Scale - Acute(SCIPUS-A) .................................25-39 25.2.5.7 Stirlings Pressure Ulcer Severity Scale .................................................................25-40 25.2.5.8 Waterlow Scale ......................................................................................................25-41 25.2.6.1 Functions of the Reproductive System ...................................................................25-42 25.2.6.1 Emotional Quality of the Relationship Scale (EQR) ................................................25-42 25.2.6.2 Knowledge, Comfort, Approach and Attitude towards Sexuality Scale (KCAASS)..25-43

25.2.6.3 Sexual Attitude and Information Questionnaire ......................................................25-44 25.2.6.4 Sexual Behaviour Scale (SB) .................................................................................25-45 25.2.6.5 Sexual Interest, Activity and Satisfaction (SIAS) / Sexual Activity and Satisfaction (SAS) Scales.........................................................................................................25-46 25.2.6.6 Sexual Interest and Satisfaction Scale (SIS) ..........................................................25-47 25.2.7.1 Functions - General................................................................................................25-48 25.2.7.1 Spinal Cord Injury Secondary Conditions Scale (SCI-SCS)....................................25-48 Body Function / Structure References .................................................................................25-49 25.3 Activity ........................................................................................................................25-55 25.3.1 Mobility .....................................................................................................................25-57 25.3.1.1 4 Functional Tests for Persons who Self-Propel a Manual Wheelchair (4FTPSMW) .............................................................................................................25-57 25.3.1.2 6-Minute Walk Test (6MWT) ..................................................................................25-58 25.3.1.3 10 Meter Walking Test (10 MWT)...........................................................................25-59 25.3.1.4 Clinical Outcome Variables Scale (COVS) .............................................................25-60 25.3.1.5 Capabilities of Upper Extremity Instrument (CUE)..................................................25-61 25.3.1.6 Functional Standing Test (FST)..............................................................................25-62 25.3.1.7 The Grasp and Release Test (GRT) ......................................................................25-63 25.3.1.8 Hand-Held Myometer .............................................................................................25-64 25.3.1.9 Jebsen Hand Function Test ...................................................................................25-65 25.3.1.10 Modified Functional Reach Test (mFRT) ..............................................................25-66 25.3.1.11 Rivermead Mobility Index (RMI) ...........................................................................25-67 25.3.1.12 Sollerman Hand Function Test .............................................................................25-68 25.3.1.13 Tool for assessing mobility in wheelchair-dependent paraplegics.........................25-69 25.3.1.14 Tetraplegia Hand Activity Questionnaire (THAQ) .................................................25-70 25.3.1.15 Timed Motor Test (TMT) ......................................................................................25-71 25.3.1.16 Timed Up and Go Test (TUG ...............................................................................25-72 25.3.1.17 The Van Lieshout Test Short Version (VLT-SV) ...................................................25-73 25.3.1.18 Walking Index for Spinal Cord Injury (WISCI) and WISCI II..................................25-74 25.3.1.19 Wheelchair Circuit (WC).......................................................................................25-75 25.3.1.20 Wheelchair Skills Test ..........................................................................................25-76 25.3.2 Self-Care...................................................................................................................25-77 25.3.2.1 The Barthel Index...................................................................................................25-77 25.3.2.2 Frenchay Activities Index (FAI)...............................................................................25-78 25.3.2.3 Functional Indepedence Measure (FIM).................................................................25-79 25.3.2.5 Functional Independence Measure Self-Report (FIM-SR) ......................................25-81 25.3.2.6 Klein-Bell Activities of Daily Living Scale (K-B Scale) .............................................25-82 25.3.2.7 Lawton Instrumental Activities of Daily Living scale (IADL).....................................25-83 25.3.2.8 Physical Activity Scale for Individuals with Physical Disabilities (PASIPD) .............25-84 25.3.2.9 Quadriplegia Index of Function (QIF) .....................................................................25-85 25.3.2.10 Quadriplegia Index of Function (QIF) Short Form..............................................25-86 25.3.2.11 Self Care Assessment Tool (SCAT) .....................................................................25-87 25.3.2.12 Skin Management Needs Assessment Checklist (SMNAC) .................................25-88 25.3.2.13 Spinal Cord Injury Lifestyle Scale (SCILS) ...........................................................25-89 25.3.2.14 The Spinal Cord Independence Measure (SCIM) .................................................25-90 Activity References ..............................................................................................................25-92

25.4 Participation ...............................................................................................................25-99 25.4.1 Assessment of Life Habits Scale (LIFE-H) ..............................................................25-102 25.4.2 The Craig Handicap Assessment & Reporting Technique (CHART) .......................25-103 25.4.3 Impact on Participation and Autonomy Questionnaire (IPAQ) .................................25-104 25.4.4 The Physical Activity Recall Assessment for People with Spinal Cord injury (PARA-SCI)............................................................................................................25-105 25.4.5 Reintegration to Normal Living (RNL) Index ............................................................25-106 Participation References ....................................................................................................25-107 25.5 Quality of Life ...........................................................................................................25-109 25.5.1 Life Satisfaction Questionnaire (LISAT -9 -11) ........................................................25-112 25.5.2 Quality of Life Index (QLI, Ferrans & Powers) .........................................................25-113 25.5.3 Quality of Life Profile for Adults with Physical Disabilities (QOLP-PD).....................25-114 25.5.4 Quality of Well Being...............................................................................................25-115 25.5.5 Qualiveen................................................................................................................25-116 25.5.6 Satisfaction with Life Scale (SWLS, Deiner Scale) ..................................................25-117 25.5.7 The Short Form 12 (SF-12) and Short Form 36 (SF-36)..........................................25-118 25.5.8 The Sickness Impact Profile 68 (SIP 68) .................................................................25-119 25.5.9 WHOQOL (BREF)...................................................................................................25-120 Quality of Life References..................................................................................................25-121 25.6 Environment .............................................................................................................25-124 25.6.1 Assistive Technology Device Predisposition Assessment (ATD-PA) .......................25-125 25.6.2 Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) ...25-126 Environment References ...................................................................................................25-127

This review has been prepared based on the scientific and professional information available in 2007. The SCIRE information (print, CD or web site www.icord.org/scire) is provided for informational and educational purposes only. If you have or suspect you have a health problem, you should consult your health care provider. The SCIRE editors, contributors and supporting partners shall not be liable for any damages, claims, liabilities, costs or obligations arising from the use or misuse of this material. Miller WC, Aubut JL, Connolly SJ, Curt A, Elliott S, Hsieh JTC, Mortenson WB, Noonan V, Noreau L, Orenczuk SG, Sakakibara BM, Sawatzky B, Steeves J, Wilkinson S, Wolfe DL (2008). Outcome Measures. In: Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Konnyu KJ, Connolly SJ, Foulon BL, Aubut JL, editors. Spinal Cord Injury Rehabilitation Evidence. Version 2.0. Vancouver: p 25.1-25.127. www.icord.org/scire

Outcome Measures 25.1 Introduction Good science and good clinical practice both depend on sound information which in turn relies on sound measurement. Measurement, the process of assigning numbers to represent quantities of a trait, attribute or characteristic (Nunnally & Bernstein 1995), enables health care professionals and researchers to describe, predict and evaluate in order to provide benchmarks and summarize change (Law 1987; Wade 2004) related to the condition and care of individuals with spinal cord injury. Despite past evidence that suggested clinicians in the rehabilitation field did not regularly use outcome measures (Cole et al. 1994; Deathe et al. 2002; Skinner et al. 2006), there is mounting evidence that now confirms more clinicians are now reporting their findings using some ordinal or quantifiable outcome tool (Kay et al. 2001; Skinner et al. 2006). Beyond the administrative push to use datasets to track patient outcomes in relation to health care costs, clinical investigators recognize that using an appropriate outcome tool, to determine the validity of a therapeutic intervention, is the key to establishing or changing the models of best practice (Cole et al. 1994). There is a sincere desire to move beyond minimal data collected through datasets such as the mandatory Canadian Institutes of Health Information (CIHI) Rehabilitation Minimum Data Set or the Functional Independence Measure (FIM). Nevertheless there is a lack of validated tools for many disciplines within rehabilitation research. There is also uncertainty as to the strength and limitations for each type of assessment. It is hoped that this book will help demystify the various tools and provide the reader with the necessary confidence to move their clinical practice and research forward on a more rigorous basis. The language used when discussing methods used (e.g. screen, tool, instrument, measure, scale) is often misused leading to confusion (Wade 2004). For the purposes of this review the terms listed will be used interchangeably to indicate a method used to capture data in a standardized manner. Why assess tools with the SCI Population? Why is there a need to assess the psychometric or clinometric properties of an outcome measure in different clinical populations? This is a fair question. For example, there is a considerable body of research suggesting the Functional Independence Measure (FIM) is a valid and reliable measure. Do we really need to test it in different diagnostic populations? The short answer is absolutely. The long answer is a bit academic, but important all the same. The FIM was developed to assess the burden of care in the stroke population (Granger et al. 1986). There has been significant investment in the development of the FIM and it has become the gold standard for the assessment of basic function (e.g. transfers, mobility, dressing, grooming, bowel and bladder). In fact it is core to the minimum dataset used in many administrative databases such as the CIHI Rehabilitation Reporting System and the Uniform Data Set for Medical Rehabilitation Centers in the United States. Despite the popularity of FIM (now a proprietary entity) and its universal recognition, the attempts to use it across a broad range of disabling physical disorders, including SCI, has revealed deficiencies and inadequacies. In fact, Catz and colleagues (1997) created the Spinal Cord Independence Measure (SCIM) in response to frustrations related to using the FIM to categorize the functional changes associated with Activities of Daily Living (ADL) during SCI rehabilitation. The results demonstrate that the responsiveness, or the ability to detect change, is better in the SCIM than the FIM (Catz et al. 1997; 2006; Itzkovich et al. 2003). 25-1

Another example is the Short Form-36 (Ware & Sherbourne 1992) and its lesser cousin the Short-Form-12. These extremely popular generic surveys of health related Quality of Life (QOL) include items which are oriented around activity limitation at the personal level, as well as participation or restriction at a societal level (e.g. can you lift and carry and object; can you climb stairs?). It seems obvious that a good proportion of the SCI population would not be able to complete many of these activities. This is why it is critical to assess that each survey item is first and foremost appropriate for the level of SCI being assessed, as unacceptable items can alter the individuals response (seriousness to answer) or confound the data from each study cohort. This stance does not mean that new tools should be created for every diagnosis, health condition or situation (Streiner & Norman 2004), but it does make sense that existing tools must be validated for each study population so they are both sufficiently accurate and sensitive to detect a meaningful difference in a functionally significant clinical endpoint between the experimental and control groups of the trial (Steeves et al. 2006). If the above reasons are not compelling enough, Portney and Watkins (2000), in their discussion of generalizability theory (the concept of reliability theory in which measurement error is viewed as multidimensional) remind us that establishing the population-specific reliability is essential especially to clinical practice. The nuances of many factors such as pain, spasticity and deformity can alter the reliability of any obtained result. In short, while a lack of evidence does not mean evidence is lacking, we are obligated to demonstrate and document the reliability and validity of a test score in order to have faith in our results. Inclusion Criteria for Measurement Tools of Interest to SCI Initially the measures targeted for this review included any and all tools for which there was at minimum one study that examined psychometric properties (reliability, validity, responsiveness) using a spinal cord population. More specifically, only those peer-reviewed manuscripts that directly reported values for their sample of SCI individuals were included. In the original version, a list of 168 tools was originally derived (approximately 10 were different formats of a similar tool), and another 25 new tools were found while completing the update. Given the vast number of tools inclusion criteria was further narrowed to select tools for review based on clinician familiarity and interest (47 for version 1, and 29 for version 2, for a total of 76 tools) as well as some tools (N=4) such as the Barthel Index that are commonly known and used internationally. For version 1, a table identifying all tools was developed and clinicians (nurses, occupational therapists, physiatrists, physical therapists, psychologists, recreation therapists and social workers) from GF Strong Rehabilitation Centre (Vancouver, British Columbia) and Parkwood Hospital (London, Ontario) were surveyed. Tools were then selected for review based on receiving at least 5 tallies of interest and/or familiarity. A similar process was carried out for identifying pertinent tool for inclusion in the update. A table was developed that identified all new tools along with those tools that were not included in the original version. Clinicians and scientists then reviewed the list and selected 29 tools to include in the update. Note, while we recognize that in many randomized controlled trials investigators assess the reliability between their raters. Most often these efforts are to ensure stability of the results within the research team and therefore the results are not to generalize to the larger pool of tool users. As a result the statistical model chosen to calculate the intra class correlation coefficient (ICC) for example is different given this purpose (Shrout & Fleiss 1979). Given the dearth of RCTs conducted in SCI research the number of studies lost is potentially very small.

25-2

Searching the Literature The Pubmed, MedLine, CINHAL, Embase, HaPI, PsycInfo, and Sportdiscus electronic databases were searched (1986 to January 2006 for Version 1, and from 2006 to January 2008 for the update) in an effort to locate papers reporting on measures. Additional searching was conducted by archiving the references of papers obtained from the electronic search. The key word spinal cord injury was used across each of the databases while the following terms varied in combination with spinal cord injury depending on the database used: validation studies, instrument validation, external validity, internal validity, criterion-related validity, concurrent validity, discriminant validity, content validity, face validity, predictive validity, reliability, interrater reliability, intrarater reliability, test-retest reliability, reproducibility, responsiveness, sensitivity to change, evidence-based medicine, outcome measures, clinical assessment tools, scales and measures. A database file was established using RefWorks to organize potential articles of interest. After eliminating duplicate manuscripts data extractors reviewed titles and abstracts in order to retain relevant papers. At this point all of the articles were read and the relevant information (reliability, validity and responsiveness coefficients and descriptions) was extracted. See Appendix 1 on page 25-8 for a copy of the data extraction form. Classifying the Tools To assist with the process or organizing the tools we used a conceptual framework developed by the World Health Organization called the International Classification of Functioning, Disability and Health or ICF for short (WHO 2001). See Figure 25.1. The advantages of using this framework include: 1) it is well recognized and used by the international community; 2) it was created to provide standard language for use when discussing health and health-related domains; 3) other reviews of outcome measures have used the ICF for similar purposes (Salter et al. 2005). Figure 25.1 Overview of the International Classification of Function, Disability and Health
Health condition (disorder or disease)

Body Functions and Structures

Activities

Participation

Environmental Factors

Personal Factors

According to the clinical practice guidelines (Consortium for Spinal Cord Medicine 1999) the expected outcomes after SCI range from basic physiological function such as motor/sensory function to higher level outcomes such as functional independence and social integration. The ICF accounts for these within the 4 constructs of its Functioning and Disability component. The 25-3

tools were classified according to the body function/structure, activity and participation constructs. Table 25.1 briefly outlines the definitions. Table 25.1 Definitions for Body Function/Structure, Activity and Participation
Functioning (positive aspect) Body function the physiological functions of the body systems including psychological functions. Body structure the anatomical parts of the body such as organs, limbs and their components. Activity the execution of a task or action by an individual Participation involvement in a life situation. Disability (negative aspect) Impairment problems with body function or structure.

Activity Limitation difficulties an individual might experience in completing a given activity. Participation Restriction problems an individual may experience with involvement in a life situation.

Quality of life (QOL) surveys are a newly emerging category of outcome measurements. To capture these assessment tools, we included an additional dimension in order to help classify QOL tools. While some clinical physiologists might question whether QOL is a true outcome tool, the Food and Drug Administration (FDA) asks that QOL assessments be included as part of any clinical trial protocol and program (often as a secondary outcome measure). Since the perceived benefit by the target market population of any therapeutic intervention is an important consideration we have included QOL in our review. Three classifiers knowledgeable to both outcome measures and the ICF independently categorized all of the tools (N=168). The classifiers later met to reconcile any disagreement about classification of the tools. When a multidimensional tool covered more than one construct (e.g. activity and participation) they placed it in the category where the tool had the most items. The tools were divided once again into sub-classifications based on the sub-domains within each of the body function/structure, activity and participation areas. Upon classification into the main domains, the tools were further categorized into appropriate subgroups based on the ICF definitions. See Table 25.2 which outlines these subcategories. Table 25.2 Subcategories used for classifying tools
Body Functions/Structures Mental functions & structures of the nervous system Sensory functions and pain & the eye, ear and related structures Functions & structures involved in voice and speech Functions & structures of the cardiovascular, haematological, immunological and respiratory systems Functions & structures of the digestive, metabolic and endocrine systems Functions & structures of the genitourinary and reproductive systems Neuromusculoskeletal Activities Learning and applying knowledge General tasks and demands Communication Mobility Self-care Participation Domestic life Interpersonal interactions and relationships Major life areas Community, social and civic life Quality of Life Subjective Objective Environment Physical Social Attitudinal

25-4

and movement-related functions & structures Functions of the skin and related structures

Assessing the Tools The team of reviewers who assessed each tool consisted of clinicians and scientists who have long established expertise in a wide variety of relevant research areas. Combining their knowledge of SCI with the data on the properties of the outcome tools, allowed us to generate the summaries for this chapter. Countless numbers of books and manuscripts have been written classifying and discussing psychometric principles and standards for the selection or validation of clinical tools. It is not our intent to replicate this process, but instead refer the reader to a couple of key dispositions such as Streiner and Normans Health Measurement Scales (2003) and Portney and Watkins chapters (4, 5 and 6) on reliability and validity (2000). For an excellent overview that provides insightful tips for selecting tools directly related to rehabilitation, read Finch and colleagues Physical Rehabilitation Outcome Measures (1999). Data was extracted from manuscripts reporting findings about the psychometric properties and several pragmatic factors for each of the various tools. In accordance with similar projects designed to review outcome measures (Salter et al. 2005) we relied heavily on the work by Fitzpatrick and colleagues (1998) for the methods and standards related to data extraction. Our evaluation criteria as well as the standard for quantifying the rating where possible are presented in Table 25.3. For an example of the data extraction forms used for the project see Appendix 1 on page 25-8. Table 25.3 Criteria for Rating Outcome Measures
Criterion Reliability Definition - the reproducibility and internal consistency of the tool (synonyms include stability, repeatability, etc) - Reproducibility is the degree to which the score is free from random error. Test retest, inter/intra observer reliability are commonly evaluated using statistics including ICC, Pearsons or Spearmans coefficients and kappa coefficients (weighted or unweighted). - Internal consistency assesses the homogeneity of the scale items. It is generally examined using split-half reliability or Cronbachs alpha statistics. Item-to-item and item-to-scale correlations are also accepted methods. Does the instrument measure what it purports to measure? Forms of validity include face, content, construct and criterion. Concurrent, convergent or discriminative and predictive validity are all considered to be forms of criterion validity. However, concurrent, convergent and discriminative validity all depend on the existence of a gold standard to provide a basis for comparison. If no gold standard exists, they represent a form of Standard - Internal consistency ratings are: excellent (0.80), adequate (0.70-0.79), or poor (0.70) (Andresen 2000). - ICC and Kappa for inter/intra and test-retest ratings are: excellent (0.75), adequate (0.4-0.70), or poor (0.40). (Andresen 2000).

Validity

Construct/convergent and concurrent correlations: Excellent (0.60), Adequate (0.31-0.59), Poor (0.30) (Andresen 2000) ROC analysis AUC: Excellent (0.90), Adequate (0.70-0.89), Poor (<0.70) (McDowell & Newell 1996) There are no agreed on standards by which to judge sensitivity and specificity as a validity index. (Riddle & Stratford 1999)

25-5

Responsiveness

construct validity in which the relationship to another measure is hypothesized (Finch et al. 2002) Sensitivity to changes within patients over time (which might be indicative of therapeutic effects). Responsiveness is most commonly evaluated through correlation with other changes scores, effect sizes, standardized response means, relative efficiency, sensitivity & specificity of change scores and ROC analysis. Assessment of possible floor and ceiling effects is included as they indicate limits to the range of detectable change beyond which no further improvement or deterioration can be noted.

Interpretability

Acceptability

Feasibility

Clinical Summary

How meaningful are the scores? Are there consistent definitions and classifications for results? Are there norms available for comparison? How acceptable the scale is in terms of completion by the patient does it represent a burden? Can the assessment be completed by proxy, if necessary? Are there different formats available? Extent of effort, burden, expense & disruption to staff/clinical care arising from the administration of the instrument. Availability of the tool or representative version of the tool. Cost of the tool. Will the tool prove useful in clinical situations? What SCI sub groups is it suitable to use with? What type of information is generated (descriptive, predictive, and evaluative)? Will it help with discharge planning? Is the tool used as a component of an administrative data base?

Sensitivity to change: Excellent: Evidence of change in expected direction using methods such as standardized effect sizes: Small (<0.50), Moderate (0.50-0.80), Large (0.80) Also, by the way of standardized response means, ROC analysis of change scores (area under the curve see above) or relative efficiency. Adequate: Evidence of moderate/less change than expected; conflicting evidence. Poor: Weak evidence based solely on p-values (statistical significance) (Andresen 2000). Floor/Ceiling Effects: Excellent: No floor or ceiling effects Adequate: Floor and ceiling affects 20% of patients who attain either the minimum (floor) or maximum (ceiling) score. Poor: >20%. (Hobart et al. 2001) Jutai & Teasell (2003) point out these practical issues should not be separated from consideration of the values that underscore the selection of outcome measures. A brief assessment of practicality will accompany each summary evaluation.

Review Rigor In order to summarize the quality of each assessment tool with respect to the reported reliability, validity and responsiveness, a summary table, similar to Table 25.4 below is presented at the end of each review. The standards for rigor were adapted from McDowell and Newells (1996), as well as Andresens (2000) recent overview of Criteria for Outcome Measures.

25-6

Table 25.4 Definitions of Rigor used to Rate the Psychometric Properties of the Measures
Excellent (+++): at least 2 studies involving subjects with SCI that corroborate each others findings (e.g., 2 studies with inter-rater reliability of > 0.75). Adequate (++): a single study involving subjects with SCI which has adequate to excellent findings of reliability, validity and / or responsiveness Poor (+): a single study involving SCI subjects which has findings of reliability, validity and / or responsiveness and less than adequate findings of reliability, validity and or responsiveness. Not Available (N/A) (-): no information is available.

Prolonged standing or other methods of producing muscle stretch may result in reduced spasticity. Assessments of rigor, using the above standards, are provided along with the evaluation ratings
of the reliability, validity and responsiveness for each measure at the bottom of each summary. The information is presented in tabular format, as outlined below. Table 25.5 Psychometric Summary
Rigor Reliability Results Rigor Validity Results Rigor Responsiveness Results Floor/ceiling

Summary tables of the extracted data (coefficients) can be obtained by contacting Brodie Sakakibara at bsakakibara@hotmail.com.

25-7

Appendix 1: Outcome Measure Data Extraction Form

Reviewer ID: ICF Level:

Type of Outcome Measure: Description:

Total articles:

Author ID

Year

Study Design

Setting

Population (sample size, age)

Group (i.e. trans-femoral amputee)

1. RELIABILITY Author ID Internal Consistency Test-retest Reliability Inter-rater reliability Reliability Statistics Coefficient

2. VALIDITY Author ID Content Validity Construct Validity (Divergent/convergent/ Known groups) Concurrent Criterion Validity Predictive Criterion Validity Classification sensitivity/specificity (Screening measures)

3. RESPONSIVENESS Author ID Floor/ceiling effects Responsiveness over time (p-values, SRM, ES etc.)

Other Formats Advantages Derived from evidence source

Derived from expert opinion

Limitations Derived from evidence source Summary Interpretability Acceptability Feasibility Recommendation Strongly Recommended (proceed to ICF)

Derived from expert opinion

Recommended (Proceed to ICF)

Do not Recommended

25-8

Introduction References Andresen EM. Criteria for assessing the tools of disability outcomes research. Arch Phys Med Rehabil 2000:81:S15 S20. Catz A, Itzkovich M, Agranov E, Ring H, Tamir A. SCIM--spinal cord independence measure: a new disability scale for patients with spinal cord lesions. Spinal Cord 1997;35:850-856. Catz A, Itzkovich M, Tesio L, Biering-Sorensen F, Weeks C, Laramee MT, Craven BC, Tonack M, Hitzig SL, Glaser E, Zeilig G, Aito S, Scivoletto G, Mecci M, Chadwick RJ, El Masry WS, Osman A, Glass CA, Silva P, Soni BM, Gardner BP, Savic G, Bergstrom EM, Bluvshtein V, Ronen J. A multi-center international study on the spinal cord independence measure, version III: Rasch psychometric validation. Spinal Cord 2006;44:(in press). Cole B, Finch E, Gowland C, Mayo N. In: Basmajian J, editor. Physical rehabilitation outcome measures. Health and Welfare Canada and Canadian Physiotherapy Association, Toronto ON, 1994. Consortium for Spinal Cord Medicine. Outcomes following traumatic spinal cord injury: clinical practice guidelines for health care practitioners. PDF available at http://www.pva.org/site/PageServer?pagename=pubs_generalpubs 1999. Deathe AB, Miller WC, Speechley M. The status of outcome measurement in amputee rehabilitation in Canada. Arch Phys Med Rehabil 2002;83:912-918. Finch E, Brooks D, Stratford PW, Mayo NE. Physical Rehabilitations Outcome Measures. A Guide to Enhanced Clinical Decision-Making (2nd ed). Canadian Physiotherapy Association, Toronto ON, 2002. Fitzpatrick R, Davey C, Buxton MJ, Jones DR. Evaluation of patient-based outcome measures for use in clinical trials. Health Technol Assess 1998:2:1 74. Hobart JC, Lamping DL, Freeman JA, Langdon DW, McLellan DL, Greenwood RJ, Thompson AJ. Evidence-based measurement: which disability scale for neurologic rehabilitation. Neurology 2001;57:639-644. Itzkovich M, Tamir A, Philo O, Steinberg F, Ronen J, Spasser R, Gepstein R, Ring H, Catz A. 2003. Reliability of the Catz-Itzkovich Spinal Cord Independence Measure assessment by interview and comparison with observation. Am J Phys Med Rehabil 2003;82:267-272. Jutai J, Teasell R. The necessity and limitations of evidence-based practice in stroke rehabilitation. Top Stroke Rehabil 2003;10:71-78. Kay TM, Myers AM, Juijbregts MPJ. How far have we come since 1992? A comparative survey of physiotherapists use of outcome measures. Physiother Can 2001;53:268-275. Law M. Measurement in occupational therapy: Scientific criteria for evaluation. Can J Occup Ther 1987;54:133-138. McDowell I, Newell C. Measuring Health. A Guide to Rating Scales and Questionnaires. Oxford University Press, New York NY, 1996. Nunnally JC, Bernstein IH. Psychometric theory (3rd ed). McGraw-Hill, Toronto ON, 1994. Portney LG, Watkins MP. Foundations of Clinical Research: Applications to Practice. Prentice Hall Health; Upper Saddle River, NJ: 2000. Riddle DL, Stratford PW. Interpreting validity indexes for diagnostic tests: An illustration using the Berg Balance Test. Phys Ther 1999;79:939-948. Salter K, Jutai J, Foley N, Teasel R. Evidenced-Based Review of Stroke Rehabilitation: Outcome Measures in Stroke Rehabilitation. (8th ed) [online]. 2005 [cited Aug 20, 2006]. Available from http://www.ebrsr.com/index_modules_sub4.html. Shrout PE, Fleiss JL. Intraclass correlations: Uses in assessing rater reliability. Psychol Bull 1979;86:420-428. Skinner A, Turner-Stokes L. The use of standardized outcome measures in rehabilitation centres in the UK. Clin Rehabil 2006;20:609-615.

25-9

Steeves JD, Lammertse D, Curt A, Fawcett JW, Tuszynski MH, et al. Guidelines for the conduct of clinical trials for spinal cord injury (SCI) as developed by the ICCP Panel: Clinical trial outcome measures. Spinal Cord 2006;44:(in press). Streiner DL, Norman GR. Health Measurement Scales: A Practical Guide to Their Development and Use. (3rd ed). Oxford University Press, New York NY, 2004. Wade D. Assessment, measurement and data collection tools. Clin Rehabil 2004;18:233-237. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-483. WHO International classification of functioning, disability and health. Geneva: World Health Organization 2001.

25-10

25.2 Body Function / Structure We start our review with outcome measures that represent the areas of body function and structure as they can be considered the foundational for any personal activity, quality of life, and societal participation. The majority of outcome measures used in clinical rehabilitation come from the Body Function and Body Structure components of ICF (Dahl 2002). While the components covered under this dimension are still mechanistically complex and by and large unresolved in terms of clinical treatment (e.g. motor function, spasticity, autonomic nervous system activity, or pain), when compared to the complexity or validity of the tools used to assess activity or activity limitation at the personal or societal level (e.g. self-care, community function, and quality of life), these measures of SCI function are perhaps more straight forward. Of course, this really underscores the complexity of valid SCI outcome assessments! The outcome measures reviewed under this category include: 25.2.1 Mental Functions & Structures of the Nervous System..............................................25-13 25.2.1.1 Beck Depression Inventory (BDI) ...........................................................................25-13 25.2.1.2 Brief Symptom Inventory (BSI) ...............................................................................25-14 25.2.1.3 The CAGE Questionnaire.......................................................................................25-15 25.2.1.4 Center for Epidemiological Studies Depression Scale (CES-D)..............................25-16 25.2.1.5 Depression Anxiety Stress Scale-21 (DASS-21) ....................................................25-17 25.2.1.6 Fatigue Severity Scale (FSS) .................................................................................25-18 25.2.1.7 The Scaled General Health Questionnaire-28 (GHQ-28):.......................................25-19 25.2.1.8 The Hospital Anxiety and Depression Scale (HADS)..............................................25-20 25.2.1.9 Patient Health Questionnaire (PHQ-9) ...................................................................25-21 25.2.1.10 The Symptom Checklist -90-Revised (SCL-90-R): ...............................................25-22 25.2.1.11 Zung Self-Rating Depression Scale (SDS) ...........................................................25-23 25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures.........................25-24 25.2.2.1 Classification System for Chronic Pain in SCI ........................................................25-24 25.2.2.2 Donovan SCI Pain Classification System ...............................................................25-25 25.2.2.3 Tunks Classification Scheme ................................................................................25-26 25.2.2.4 Wheelchair Users Shoulder Pain Index (WUSPI) ...................................................25-27 25.2.3 Functions & Structures of the Cardiovascular, Haematological, Immunological and Respiratory Systems .............................................................................................25-28 25.2.3.1 Six-Minute Arm Test (6-MAT).................................................................................25-28 25.2.3.2 Wingate Anaerobic Testing (WAnT) .......................................................................25-29 25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures.....................25-30 25.2.4.1 The American Spinal Injury Association: International Standards for Neurological Classification of Spinal Cord Injury ..........................................................................25-30 25.2.4.2 Ashworth and Modified Ashworth ...........................................................................25-31 25.2.4.3 Penn Spasm Frequency Scale (PSFS) ..................................................................25-32 25.2.4.4 Surface Electromyography (sEMG) ........................................................................25-33 25.2.5 Functions of the Skin and Related Structures............................................................25-34 25.2.5.1 Abruzzese Scale ....................................................................................................25-34 25.2.5.2 Braden Scale .........................................................................................................25-35 25.2.5.3 Gosnell Measure ....................................................................................................25-36 25-11

25.2.5.4 Norton Measure .....................................................................................................25-37 25.2.5.5 Spinal Cord Injury Pressure Ulcer Scale (SCIPUS) Measure .................................25-38 25.2.5.6 Spinal Cord Injury Pressure Ulcer Scale - Acute(SCIPUS-A) .................................25-39 25.2.5.7 Stirlings Pressure Ulcer Severity Scale .................................................................25-40 25.2.5.8 Waterlow Scale ......................................................................................................25-41 25.2.6.1 Functions of the Reproductive System ...................................................................25-42 25.2.6.1 Emotional Quality of the Relationship Scale (EQR) ................................................25-42 25.2.6.2 Knowledge, Comfort, Approach and Attitude towards Sexuality Scale (KCAASS)..25-43 25.2.6.3 Sexual Attitude and Information Questionnaire ......................................................25-44 25.2.6.4 Sexual Behaviour Scale (SB) .................................................................................25-45 25.2.6.5 Sexual Interest, Activity and Satisfaction (SIAS) / Sexual Activity and Satisfaction (SAS) Scales.........................................................................................................25-46 25.2.6.6 Sexual Interest and Satisfaction Scale (SIS) ..........................................................25-47 25.2.7.1 Functions - General................................................................................................25-48 25.2.7.1 Spinal Cord Injury Secondary Conditions Scale (SCI-SCS)....................................25-48 Body Function / Structure References .................................................................................25-49

25-12

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.1 Beck Depression Inventory (BDI) The Beck Depression Inventory is a self-report measure of depression and includes items measuring cognitive, affective, behavioural, interpersonal, and somatic aspects of depression (Beck et al. 1961). It was developed as an indicator of depressive symptomatology and severity. The items of this 21-item questionnaire were originally developed from observations of depressed subjects. Procedure: Self-report scale where the patient reads the scale and marks those statements which have been true during the past week. An interview format is also an option where the interviewer reads the statements and records the subjects choices. The questionnaire includes 21 items, each consisting of 4 self-statements that range from a mild or neutral statement (mild=0) to one indicating a severe (severe=3) form of a symptom. The measures total score is between 0 63. Advantages: The BDI can be used for screening purposes and perhaps a useful diagnostic aid in doubtful cases (Salkind 1969). The measure is easily applied and scored by the clinician, and can be quickly completed by the patient (Salkind 1969). Limitations: Several somatic symptoms included in the BDI are common in SCI and may be confused with symptoms of depression. As a result, the BDI score may be artificially inflated among SCI patients, resulting in higher levels of depression than is actually the case (Radnitz et al.1997). Only one study has assessed the psychometric properties of the BDI among a SCI population. Interpretability: Higher scores reflect more symptoms of depression. As a result of the inclusion of somatic factors that subsequently inflate the BDI scores among SCI patients, there are different views on what the cut scores should be for this population. For clinical populations, a cut score of 13 has been recommended for screening purposes. For a SCI population, Radnitz et al. (1997) suggest that cut scores depend upon whether the concern is more on sensitivity, specificity or the percentage of subjects correctly classified. A cut score of 18 is recommended if the primary concern is sensitivity, and 27 for specificity.* Acceptability: The time taken to complete the BDI is normally around 10 minutes but times may vary depending on the patients level of depression. Very depressed patients have taken much longer to complete the BDI and have had difficulty in making a choice between the statements (Metcalfe & Goldman 1965). Feasibility: The administration of the BDI demands little time, its scoring is simple, and it is not sensitive to doctors and nurses bias or influence (Metcalfe & Goldman 1965). No training is required to administer to BDI. The scale is copyrighted and may be obtained from Harcourt Assessment, http://harcourtassessment.com. Clinical Summary: The BDI is simple to use, uses easy understandable language, and is easy to score. The questionnaire however, does not reflect all symptoms used in the DSM-IV criteria. The revised BDI II has been modified to more accurately parallel the DSM-IV criteria, however, to date the BDI IIs measurement properties have not been evaluated among a SCI population. Psychometric Summary Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ SS ++ N/A N/A N/A
Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; SS=sensitivity/specificity * Radnitz et al. explain that their results should be considered tentative until replicated as they were not able to crossvalidate the findings with another sample.

25-13

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.2 Brief Symptom Inventory (BSI) The Brief Symptom Inventory (BSI) is the shortened version of the Symptoms Checklist-90 (SCL-90). In developing the BSI, an item-selection algorithm was used to identify items that most heavily loaded on the 9 dimensions to achieve similar reliability and validity results as the SCL-90. The BSI is a 53-item questionnaire covering nine symptom dimensions of depression: somatization (7 items), obsession-compulsion (6 items), interpersonal sensitivity (4 items), depression (6 items), anxiety (6 items), hostility (5 items), phobic anxiety (5 items), paranoid ideation (5 items), and psychoticism (5 items). Four of the 53 items are not part of any of the dimensions but are included because they are deemed clinically important. Three global indices of distress may also be obtained as sub-scale scores: Global Severity Index (GSI), Positive Symptom Distress Index (PSDI), and Positive Symptom Total (PST). The global indices measures current or past levels of symptomatology, intensity of symptoms, and number of reported symptoms (Derogatis 1983). Procedure: Self-report or interview format. Respondents rank each item on a 5-point scale ranging from 0 (not at all) to 4 (extremely). Rankings represent the intensity of distress over the past week. The GSI is a mean value which is calculated by summing all of the nine dimensions plus the 4 additional items not included in any of the dimensions, and then dividing by the number of items to which the individual responded. The PST is a count of all the items with nonzero responses. The PSDI is the average level of distress and is calculated by summing the values of the items receiving non-zero responses and dividing by the PST (Derogatis 1975). Advantages: The scale reportedly takes less 8-12 minutes to complete (Tate et al. 1993). The BSI is a well-known and well-accepted instrument. It requires minimal professional time or training, is non-intrusive, and would be easy to include in institutional routines (Morlan & Tan, 1998) Limitations: Tate et al (1993) report that none of the subscales contained a single separate construct for their SCI sample for factor analyses indicating a lack of conceptual clarity. The inclusion of somatic items may cause an overestimation of psychiatric symptoms. Interpretability: Scores are interpreted by comparison to age-appropriate norms. Normative data are available for both clinical and non-clinical samples (Derogatis 1975). Raw scores are converted to t-scores. A t-score 63 for a single subscale or for two summed subscales indicates a clinical case (Schurle Bruce A et al. 2006). Heinrich and Tate (1994) recommend higher t-scores for SCI populations because of the somatic items. Acceptability: The instrument requires only a reading knowledge equivalent to that of a sixth grade education (Morlan & Tan 1998) and is available in English, Spanish & French. Feasibility: There is minimal clinician / patient burden. Scoring can be done by hand calculation however computer scoring is available. Minimal training to administer the BSI however a specialized degree in health care together with an appropriate license or certificate is required to purchase copyrighted forms and manual from the publisher www.pearsonassessments.com. Clinical Summary: The BSI is best used to screen for global psychological distress. It therefore may be uneconomic to use a 53 item questionnaire to obtain a single score for general distress. Normative data are available for a variety of non-SCI populations. The Zung Self-Rating Depression Scale was found to have higher sensitivity compared to the BSI when identifying individuals with depression (Tate et al, 1993). Psychometric Summary Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ IC +++ ++ Construct ++ N/A N/A N/A Criterion +++ +++ SS ++
Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; TR=test retest; SS=sensitivity/specificity

25-14

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.3 The CAGE Questionnaire The CAGE is a 4 item screening questionnaire used to identify those individuals for whom more extensive evaluation of alcohol use is recommended. Initially developed by J. A. Ewing (1984), it is the oldest and likely most extensively used questionnaire across a variety of clinical and research settings. Originally developed for use with adults, it has been used in elderly populations as well. Procedure: A self report pen/paper or interview format. Responses of yes/no to the following: Have you ever felt you should Cut down on your drinking? Have people Annoyed you by criticizing your drinking? Have you ever felt bad or Guilty about drinking? Have you ever taken a drink first thing in the morning (Eye opener) to steady your nerves or get rid of a hangover?

Advantages: Brief, extensively used in variety of settings. Limitations: Susceptible to underreporting. Minimum age 16 years. Not recommended for use with adolescents. Not to be used as a diagnostic instrument (with increasing scores implying a continuum of increasing risk for alcohol use) but rather a screening index to cue for further evaluation. Acceptability: Less than 5 minutes to complete. Feasibility: Easy to administer and score. Flesch-Kincaid grade level of 5.1. A PDF version is available at http://www.lifewisewa.com/pdfs/012695.pdf. Interpretability: Typically, two or more of the questions answered affirmatively are considered to be CAGE positive, though some suggest a positive response to a single item warrants more in-depth investigation of consumption. In non-SCI populations, the CAGE test (scores >=2) has a sensitivity of 93% and a specificity of 76% for the identification of problem drinkers (Bernadt et al. 1982). Clinical Summary: Score correlates positively with pre-SCI consumption patterns and a greater incidence of medical complications (Tate 2003). Important that questions refer to whole life history rather than a particular period. As such, it does not discriminate between active and inactive drinkers. Used in combination with information regarding usual consumption patterns (e.g., frequency/quantity/heaviest consumption). In some populations, such inquiry can inhibit responses to CAGE questions, if it precedes them. Psychometric Summary
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Construct ++ N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-15

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.4 Center for Epidemiological Studies Depression Scale (CES-D) This screening measure was developed by the National Institute of Mental Health to identify current depressive symptomatology related to major or clinical depression in the general population (adults and adolescents). The items were generated from other previously validated scales (Radloff 1977). Twenty and 10-item versions are available. The items include depressed mood, feelings of guilt, worthlessness and helplessness, psychomotor retardation, loss of appetite and sleep difficulties. Both versions have an emphasis on affective symptoms. The 20item version has been extensively used in large studies and norms are available. Since 1980, the CES-D- 20 has been cited in approximately 50 articles involving adjustment to SCI. Responses are based on the frequency of occurrence during the past week. Uses a 4-point ordinal scale: Rarely or none of the time (less than 1 day); Some or a little of the time (1-2 days); Occasionally or a moderate amount of the time (3-4 days); Most or all of the time (5-7 days) Procedure: Self report using pen/paper or interview. A summary score is calculated. For the CES-D-20, 4 items are rated in positive direction to avoid response set. Advantages: 5 10 minutes to complete. Several translations are available (Dutch, Spanish, Thai, Chinese, Italian). Limitations: Not a diagnostic tool - a screening measure to help identify individuals at risk for depression. Created for the general population. Acceptability: Easy to complete. Flesch-Kincaid Grade Level 4.1. Shorter versions such as the 10, 8 and 4 item are available but only the CES-D 10 has been assessed in the SCI population. Feasibility: Easy to administer and score. Copyright Center for Epidemiological Studies, National Institute of Mental Health; West Publishing Company. PDF version available at http://www.chcr.brown.edu/pcoc/cesdscale.pdf Interpretability: The range of scores on the CES-D-20 is 0-60 (0-30 for the CES-D-10) with higher scores indicating greater symptoms. A CES-D-20 cutoff score of 16 is indicative of significant or mild depressive symptomatology, and a cut score of 11 for the shorter version is recommended. It is equivalent to experiencing six symptoms for most of the previous week or a majority of symptoms on one or two days. Some suggest increasing the cutting score in primary care settings to reduce the number of false positives. For example, the Thai version (Kuptniratsaikul et al. 2002) used a cutoff score of 19 for the CES-D-20 to identify depression in the SCI sample. The CES-D-20 has been used in sample of adolescents and young adults (Radloff 1991) and more recently in studies of older adults. Clinical Summary: Radloff (1977) cautions that the instrument should not be used for clinical diagnoses nor should individual scores be interpreted. It may fail to separate depression from generalized anxiety or from depression secondary to other diagnoses. In some clinical applications, the Beck Depression Inventory (second edition) or the PHQ-9 may be preferable as these survey a two week period consistent with DSMIV criteria for major depression. Further, they both include an item specific to suicidal ideation. Psychometric Summary:
Reliability Rigor ++ Results IC +++ TR +++ IC +++ TR +++ Validity CES-D 10 Rigor Results ++ Construct ++ Responsiveness Rigor N/A Results N/A Floor/ceiling N/A

CES-D 20 Construct ++ N/A N/A N/A Predictive ++* SS ++* Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; TR=Testretest; SS=Sensitivity/Specificity * Thai version of the CES-D. Data are adequate for the Thai version but not for the English version. +++ ++ +++ ++

25-16

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.5 Depression Anxiety Stress Scale-21 (DASS-21) The Depression Anxiety Stress Scale-21 was derived from 42 DASS. It provides data about three negative emotional states: Depression, Anxiety and Stress (Lovibond & Lovibond 1995a). These three emotional states comprise the scales three 7-item subscales. The scale was originally developed to assess anxiety and depression while maintaining maximum discrimination between the two constructs. The Stress scale was added as a result of factor analyses finding a third subscale. The depression scale is characterized by a loss of selfesteem and incentive, and is associated with a low perceived probability of attaining life goals. The anxiety scale assesses the links between the states of anxiety and the acute responses of fear. The stress scale measures arousal and tension with a low threshold for becoming upset or frustrated (Lovibond & Lovibond 1995a). Procedure: Self report or interview format. The 21 items consist of statements referring to the past week and each item is scored on a 4-point scale (0 = Did not apply to me at all, to 3 = Applied to me very much or most of the time). Advantages: The scale is quick and easy to administer. It excludes many somatic items that may not be relevant to those with SCI and the instrument has greater sensitivity for identifying SCI patients with possible anxiety disorders (Mitchell et al. 2007). The ability to separately measure the three emotional states may be of considerable use for researchers and clinicians (Lovibond & Lovibond 1995a). Limitations: Only one study has assessed the psychometric properties of the instrument among patients with SCI. Sensitivity of the tool is better for anxiety than depression. Interpretability: Subscale scores for the DASS-21 are calculated as the simple sum of the responses to the seven items and then the scores are multiplied by 2. Therefore scores on each subscale range from 0 to 42. Higher scores indicate greater levels of distress. Interpretation of the scores can be based on raw scores (0-9 = normal, 10-13 = mild, 14-20 = moderate, 21-27 = severe, and >28 = extremely severe), percentile scores (0-78 = normal, 78-87 = mild, 87-95 = moderate, 95-98 = severe, and 98-100 = extremely), or by converting to z-scores. Normative data are available from the DASS manual however these are based on the full DASS. Acceptability: The scale appears understandable and easy to complete. It is available in English, Portuguese, and Cantonese. Feasibility: The DASS-21 provides a quicker more feasible scale than the full DASS. The reported time to administer is less than 10 minutes. A manual for the full DASS which provides a detailed account of the scale development is available from the authors (Lovibond & Lovibond 1995b). The scale may be downloaded from http://www.psy.unsw.edu.au/dass. The Cantonese version is available from Dr. Calais Chan, calaischan@cuhk.edu.hk. Clinical Summary: Comparison of the DASS-21 to clinical judgment showed that the measure has clinical utility as a screening tool for identifying, differentiating and assessing depression, anxiety, and stress in patients with SCI (Mitchell et al. 2007). It is one of two instruments that has an anxiety specific scale and has had a measurement property evaluation of this subscale. This is an advantage given that measures of anxiety and depression often do not distinguish between these conditions and anxiety is likely more prevalent than depression. Psychometric Summary
Reliability

Rigor N/A

Results N/A

Validity Rigor ++

Results Criterion (D) +++ Criterion (A) +++ Criterion (S) N/A

Responsiveness Rigor Results N/A N/A

Floor/ceiling N/A

SS (D) ++ SS (A) ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; D = Depression subscale; A = Anxiety subscale; S = Stress subscale; SS = Sensitivity/Specificity.

25-17

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.6 Fatigue Severity Scale (FSS) The Fatigue Severity Scale is 9 item measure that was originally developed for use among individuals with Multiple Sclerosis (Krupp 1989). Conceptually the FSS captures the individuals experience of mental or psychological fatigue and how it interferes with performing certain activities (exercise, work and family life). It has been extensively validated in other populations and may be the most widely used measure of fatigue in neurologic disorders (Anton et al. 2008). Procedure: The FSS is a self report scale. Using of a 7-point ordinal scale, participants choose the level of agreement for each question, from 1 = strongly disagree to 7 = strongly agree. Ratings are based on their experience of fatigue over the past seven days. Advantages: The FSS is quickly administered and scored and it has been extensively used and evaluated in a number of populations. The scales focus on fatigue and its effect on function is of particular interest in rehabilitation and community settings (Anton et al. 2008). Limitations: The FSS might have difficulties distinguishing fatigue from depression (Anton et al. 2008). Moreover, the influence of pain may influence scores on the FSS. Further research is needed to investigate the relationship between pain, depression and fatigue in SCI. The responsiveness to change values for the FSS are not currently known for SCI. Some of the items may not be reflective of the SCI condition (Hammel et al, 2008). Item regarding the influence of fatigue on motivation has very low internal consistency. Interpretability: Summary scores are calculated by determining the mean. The scores range from 1-7 with higher scores indicating higher levels of fatigue. Cut-mean scores of 4 and over are indicative of significant fatigue in other populations however scores of 5 and over had a higher sensitivity and specificity (area under the curve = 0.80) when predicting a single item fatigue score (Anton et al, 2008). Acceptability: Some of the items on the FSS may not be pertinent for the SCI population. For instance item #2 which asks whether exercise brings on fatigue has been reported not to make sense to individuals with high tetraplegia who may not otherwise participate in exercise (Hammel et al, 2008). The FSS has adequate reliability and support for validity has been demonstrated by correlating the FSS with measures of vitality, depression and a single item visual analogue fatigue measure (Anton et al. 2008). Takes about 5 minutes to complete. Feasibility: The FSS is easy to use in both clinical practice and research. It takes little time to administer. A copy of the tool can be obtained online at http://www.multsclerosis.org/fatigueseverityscale.html. Clinical Summary: This is a easy to understand and quickly administered tool which would provide a useful screen for fatigue in individuals with SCI. Results should be interpreted with caution as some item may not have meaning for the SCI population. Psychometric Summary Reliability Validity Rigor Results Rigor Results ++ IC +++ ++ Construct ++ TR +++ AUC ++ SS ++ Responsiveness Rigor Results N/A N/A

Floor/ceiling N/A

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency; AUC=area under ROC curve; SS=Sensitivity/Specificity

25-18

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.7 The Scaled General Health Questionnaire-28 (GHQ-28): The GHQ is a 28 item self-administered questionnaire used for the detection of psychiatric distress related to general medical illness. It requires respondents to indicate if their current state differs from his or her usual state, thereby assessing change in characteristics and not lifelong personality characteristics. The tool has been used successfully in community settings and non-psychiatric clinical settings in many countries (Lykouras et al. 1996). The GHQ-28 is one of four versions of the GHQ. The original version of the GHQ has 60 items and the three shorter versions have 30, 28, and 12 items. The GHQ-28 yields four subscales including, somatic, anxiety, social dysfunction, and depression. Each subscale contains 7 items in the GHQ-28 (Goldberg & Hillier, 1979). The GHQ-28 was designed from the results of a principal components analysis based on the original GHQ. Procedure: A self-administered questionnaire in which the patients base their responses on their health state over the past two weeks. There are four possible scoring methods (GHQ scoring, Likert scoring, Modified Likert scoring, C-GHQ scoring), all comprising of a 4 point scoring system for each item. The test authors, Goldberg and Hillier (1979), advocate the use of the GHQ scoring (0-0-1-1) method, where 0 is given for the lesser two symptom severity options and 1 for the greater two symptom severity options, thereby giving a range of scores from 0 to 28 for the GHQ-28. For example, the question, Have you recently been able to concentrate on what youre doing? a score of 0 would be given for the responses, better than usual, or same as usual, and a score of 1 would be given for less than usual, or much less than usual. Advantages: The GHQ-28 is the most well-known and popular version of the GHQ. It assesses changes in individuals daily functioning related to distress and not personality characteristics. Limitations: The scale is best used as a general measure for psychiatric disorders. Only one study has assessed the construct validity of the GHQ-28 among SCI populations. The inclusion of somatic items may cause an overestimation of psychiatric symptoms. Interpretability: The GHQ-28 yields four sub-scores and a total score. Scores are calculated by summing up the item responses. Subscale scores range from 0 to 7, with higher scores indicating a greater probability of a psychiatric distress. Total scores range from 0 to 28. Total scores that exceed 4 out of 28 suggest probable distress (Chung et al. 2006). Acceptability: The GHQ-28 appears easy to complete however no formal reading level is specified. The questionnaire is appropriate for individuals 11 years of age and older (Rush et al. 2008). Rush et al. (2008), report on evidence that although age does not seem to effect GHQ scores, womens scores tend to decline with age up to 65 years. For both men and women, scores tend to increase after age 75 years (Rush et al. 2008). Feasibility: The scale takes less than 15 minutes to administer and score. No special training is required to use the GHQ-28. A copy can be obtained from Goldberg and Hillier (1979). A users manual may be obtained from the publisher at www.nfer-nelson.co.uk. This manual is more focused on the use of the GHQ-28 for research rather than for clinical administration. Clinical Summary: The GHQ-28s subscales represent dimensions of symptomatology and not distinct diagnoses. As the scales are not independent of each other, the total score has better utility to indicate general psychological disorder than the individual scores do to screen for specific psychological disorders. Psychometric Summary
Reliability Rigor Results N/A N/A Responsiveness Results Rigor Results Floor/ceiling Construct +++ N/A N/A N/A SS ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; SS = sensitivity/specificity. Validity Rigor ++

25-19

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.8 The Hospital Anxiety and Depression Scale (HADS) The HADS is a 14 item self-report questionnaire that assesses anxiety and depression in a nonpsychiatric population. The tool was developed using outpatients from a medical clientele and was designed for the primary care population. Despite its name the HADS has also been used with community samples/populations as well (Snaith, 2003). Seven of the items reflect depression and the other seven are indicative of anxiety related symptoms (Zigmond & Snaith, 1983). One of the goals in developing the HADS was to provide a measure that differentiates symptoms on depression with those of anxiety because it is felt that these are two distinct but related conditions (Zigmond & Snaith, 1983). Procedure: A self-report or interview format can be used. Responses for each of the 14 items are based on the relative frequency of symptoms over the past week. A four point Likert scale ranging from 0 (not at all) to 3 (very often indeed) is used to score responses for each item. Responses to the items are reversed scored on every other item to monitor for response bias. Advantages: Easy to understand and quick to complete. The scale is limited to the two most common aspects of emotional disorders observed in hospital practice (Zigmond & Snaith, 1983). Limitations: It is unclear if the few somatic items influence the reliability and validity of this measure with a spinal cord injured population. Further research is needed to confirm psychometric properties, specifically specificity and sensitivity, construct validity, and test-retest reliability with this population (Woolrich et al, 2006). Interpretability: Responses are summed to provide separate scores for anxiety and depression symptomology. Scores range from 0 to 21 for each scale with higher scores indicating greater likelihood of depression or anxiety. For each scale, Zigmond and Snaith (1994) recommend that raw scores between 8 and 10 identify mild cases, 11 15 moderate cases, and 16 or above severe cases. Acceptability: HADS was constructed from data supplied by outpatients between the ages of 16 and 65 attending general medical clinics. The scale was found to be very acceptable to the patients who had no difficulty in understanding its purpose and completing it (Zigmond & Snaith, 1983). Versions of the scale are available in English, Arabic, Dutch, French, German, Hebrew, Swedish, Italian, and Spanish. The HADS and manual is available from http://www.nfernelson.co.uk or email: information@nfer-nelson.co.uk. Although an online pdf version is available at http://www.eardoctor.org/pdf/Hospital%20Anxiety%20and%20Depression%20Scale.pdf. Feasibility: The HADS can be completed in around 5 minutes. It is easy to administer and score. No special training is required to administer or score the tool. Clinical Summary: Research has reported a HADS misdiagnosis rate of 20%. As a result, and similar to other depression and anxiety measures, the HADS should only be used as a screening instrument. It is one of two instruments, with an anxiety specific scale, that has had its measurement properties evaluated for the SCI population. Given the co-occurrence of these conditions a simple scale that captures both is likely of value to the clinician. Psychometric Summary
Reliability Rigor Results ++ IC (D) ++ IC (A) +++ Validity Rigor ++ Results Construct (D) +++ Construct (A) ++ Responsiveness Rigor Results N/A N/A Floor/ceiling N/A

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; D = Depression subscale; A = Anxiety subscale.

25-20

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.9 Patient Health Questionnaire (PHQ-9) The PHQ-9 is a 9 item screening measure devised to identify probable major depressive disorder (MDD) among adult primary care patients (Bombardier et al. 2004). The items parallel the diagnostic criteria of major depression, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). It was developed for use with medical patients to establish validity in populations with high rates of nonspecific physical symptoms that can confound a diagnosis of major depression. Assessment of symptoms and functional impairment indicating a diagnosis, and a severity score can be derived to help monitor treatment effects (Bombardier et al. 2004). Items are rated in terms of how persistent the symptoms have been in the past 2 weeks: 0 not at all, 1 several days, 2 more than half of the days, 3 nearly every day Procedure: Self report pen/paper or interview format. Symptomatology and severity scores can be derived based on the inclusion of specific items or by summing response categories. Advantages: Easy to understand and complete. Corresponds with nosological criteria (DSMIV). Limitations: One study of SCI patients assessed at one year post injury. Acceptability: Takes 5 minutes to complete. Items easy to understand. Appears acceptable to non-psychiatric samples. English and Spanish versions available. Feasibility: Easy to administer and score. Measure available online in PDF format Copyright Pfizer Inc. after agreeing to several conditions including use for research, in clinical programs or physician education (http://www.pfizer.com/pfizer/phq-9/index.jsp) or http://www.depressionprimarycare.org/clinicians/toolkits/materials/forms/phq9/ (includes scoring guide). Interpretability: Symptomatology and functional impairment for making a diagnosis of MDD requires a positive response to at least one of feelings of depression OR anhedonia for more than half the days in the past 2 weeks AND at least somewhat difficult functioning at work/home or getting alone with others. Severity scores are derived by adding the response options with scores ranging from 0-27. Scores of > 20 indicate major depression (severe), 15-19 major depression (moderately severe), 10-14 moderate and 5-9 mild depressive symptomatology. Clinical Summary: While having demonstrated good internal consistency, construct validity, sensitivity and specificity in a group of SCI survivors 1 year post injury, the PHQ-9 requires additional comparison with a criterion standard. Further, diagnostic specificity of somatic symptoms during inpatient acute rehabilitation is yet to be established. Available findings support that somatic symptoms are not simply nonspecific symptoms of SCI, but rather, are also predictive of MDD and should be included in arriving at a diagnosis in post-acute SCI sample (Bombardier et al. 2004). Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Construct ++ N/A N/A N/A SS +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; SS=Sensitivity/Specificity Rigor ++ Rigor ++ Reliability Results IC +++

25-21

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.10 The Symptom Checklist -90-Revised (SCL-90-R): The SCL-90-R is a revised version of the original SCL-90 questionnaire and is used as a screening measure of general psychiatric symptomatology (Buckelew et al. 1988). It consists of items regarding 90 common psychiatric symptoms and includes dimensions measuring somatization, obsessive-compulsive, depression, anxiety, phobic anxiety, hostility, interpersonal sensitivity, paranoid ideation, and psychoticism. Two items directly assess the frequency of sleep disturbance. Three global indices of distress may also be obtained: Global Severity Index (GSI), Positive Symptom Distress Index (PSDI), and Positive Symptom Total (PST). The global indices measure current or past levels of symptomatology, intensity of symptoms, and number of reported symptoms (Derogatis 1983). Procedure: Self-report questionnaire. Patients are asked to rate the severity of their experiences with 90 symptoms over the past week on a 5-point scale ranging from 0 not at all to 4 extremely. The symptoms are assigned to 9 dimensions reflecting various types of psychopathology. Three supplementary global indices reflect the degree of symptomatology: the GSI is the average severity and depth of impairment of all answered statements; the PST Index is the total number of the symptoms experienced; and the PSDI is the level of distress corrected for the number of symptoms reported. Advantages: The Global Severity Index can be used as a summary of the test to assess distress. The tool has been found useful in quantifying a variety of emotional reactions in adults following a spinal cord injury (Overholder et al. 1993; Frank & Elliot 1987). Norms have been developed for a variety of patient and non-patient populations. Limitations: It may be uneconomic to use a 90-item instrument to obtain a single score for distress (Hardt et al. 2000). The inclusion of somatic items may cause an overestimation of psychiatric symptoms. Interpretability: The SCL-90-R is normed for 4 groups: adult psychiatric outpatients; adult nonpatients; adult psychiatric inpatients; and adolescent non-patients. Raw scores may be converted to t-scores. A t-score 63 on a single scale or when any two subscales are combined is considered to be indicative of someone with significant psychiatric symptomology Schurle Bruce A et al, 2006). Acceptability: The instrument requires a reading knowledge equivalent to that of a sixth grade education. It takes less than 15 minutes to complete. The instrument is available in English, Spanish and French. Feasibility: Scoring the questionnaire by hand is relatively simple, computer scoring is also available. A specialized degree with an appropriate license or certificate is required to purchase copyrighted forms and the manual from the publisher, www.pearsonassessments.com. Clinical Summary: The SCL-90-R is best used to screen for global psychological distress. It therefore may be uneconomic to use a 90-item questionnaire to obtain a single score for general distress. This questionnaire has received much research attention and as a result normative are available for a variety of patient and non-patient populations. Psychometric Summary
Reliability Rigor Results ++ IC +++* Validity Rigor +++ Results Construct +++ Responsiveness Rigor Results N/A N/A Floor/ceiling N/A

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency. * was only assessed for the research subscales. To further assess IC, Pearson product-moment correlations were obtained by correlating each item with the total subscale score. Correlations ranged from 0.25 0.76 for the somatic depression subscale and from 0.48 0.86 for the cognitive/affective subscale.

25-22

25.2.1 Mental Functions & Structures of the Nervous System 25.2.1.11 Zung Self-Rating Depression Scale (SDS) The Zung Self-Rating Depression Scale (SDS) is a well-established (Zung 1965) screening measure of adult depression severity that has been used in a variety of mental health areas including primary care, psychiatric, drug trials, and related clinical, institutional, and research settings. The 20-item instrument identifies various symptoms of depression related to: Affective (e.g., feeling downhearted and blue, crying spells) Psychological (e.g., hopeless, irritable, suicidal ideation) Somatic (e.g., agitation; retardation)

Symptoms over the past several days are rated according to a 4-point (1 to 4) ordinal scale. Half the items are worded positively and half are worded negatively (total possible of 80 points) 1 - Little or none of the time 2 - Some of the time 3 - A large part of the time 4 - Most or all of the time

Procedure: Self-report pen and pencil or interview format. Advantages: Can be used to measure intervention outcomes over time. Useful for clinical and research purposes. Limitations: Limited information regarding use in SCI population (Tate et al. 1993). Items are similar to, but do not exactly match DSM-IV criterion for major depressive disorder. Has been criticized due to its focus upon symptom frequency rather than severity, though its intent was to assess the latter. Acceptability: Quick to complete (<10 minutes). The positive and negative item wording may be confusing for some individuals. Available in English, Chinese, Russian, Thai, Czech, Farsi, Indonesian, Lithuanian. Appears acceptable to non-psychiatric samples. Feasibility: Easy to administer and score. Has been translated into many languages. Copyright American Medical Association. Measure widely available in PDF versions (with scoring key) at: http://healthnet.umassmed.edu/mhealth/ZungSelfRatedDepressionScale.pdf. An online version is available at: http://www.afraidtoask.com/depression/depressionzung.htm. Other language versions available at: www.who.int/substance_abuse/research_tools/zungdepressionscale/en/index.html. Interpretability: Scores range from 20 to 80 with higher scores indicating increased depressive symptoms. Scores over 50 suggest depression with scores over 69 indicating severe depression. Sensitivity to correctly identify when depression is present using clinician ratings as the gold standard was 86% in the SCI population (Tate et al. 2003). Clinical Summary: The Zung provides information that enables description and evaluation of patients/subjects. Since 1980, has been cited in approximately 25 investigations of adjustment to SCI. In some clinical applications however, the Beck Depression Inventory (second edition) or the PHQ-9 may be preferable as they survey a two week period consistent with DSMIV criteria for major depression. Further, they include an item specific to suicidal ideation. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Construct N/A N/A N/A +++* ++ SS ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency *compared to the BSI, MEDS, and Ilfeld-PSI Rigor ++ Rigor +++ Reliability Results IC +++

25-23

25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures 25.2.2.1 Classification System for Chronic Pain in SCI This tool proposes a pain classification scheme with 2 major categories: neuropathic and musculoskeletal. Neuropathic pain is divided into 4 subcategories: SCI pain, transition zone pain, radicular pain and visceral pain. Musculoskeletal pain is divided into mechanical spine pain and over use pain. This scheme is design to help with the standardization of pain terminology used in the SCI population (Cardenas et al. 2002). Pain is categorized by pain location and distribution, as related to level of spinal injury (e.g. above level, at level or below level). This information is combined with a classification of the subjects SCI pain. Procedure: A 188 item questionnaire is administered by a clinician but could also be completed by the patient. The person identifies the worst pain problem on a body diagram and indicates whether pain worsens with activity, position or change of position or light touch. This procedure is repeated for second worse pain etc. Categorization is outlined in the table below.
Pain Category (major) Neurologic Pain Category (Specific) SCI Pain Transition zone pain Radicular Pain Visceral Musculoskeletal Mechanical spine pain Overuse pain Location Below injury in area without normal sensation At level of injury, bilateral At any dermatome level, usually unilateral, usually radiates In abdomen In back or neck, often bilateral Often above injury in areas of normal sensation in an incomplete, can be below Related to activity + _ + _ + + Affected by position _ _ + _ + + _ Worse with light touch + + _ _

+ yes, - no, + maybe

Advantages: This tool has the best reliability (within ( =0.68) and between ( =0.66) raters), standardized system for classifying pain in people with SCI using well defined terminology. Limitations: There is no information about validity or responsiveness and reliability results are based on a single study. Time taken to complete is considerable. Interpretability: This pain classification provides a nice summary table that makes it easy for clinicians to identify key problem areas that the patient has expressed. Acceptability: The initial patient burden is high however follow up session will require less time. Interview format improves utility for those with limited hand function. Feasibility: Considerable time (estimate not available) is required to complete the questions. No special equipment or training is necessary however expertise understanding pain would be an asset. See article for a copy of the tool (Cardenas et al. 2002). Clinical Summary: This tool has considerable promise but it requires additional study. This chronic pain classification scheme may be useful for individuals with complex pain conditions in order to map and monitor a patients progress related to pain management, as well as be used to compare intervention protocols across patient groups. This table can also be compared quickly with follow-up visits to determine improvement or deterioration in an area. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling Inter O ++ N/A N/A N/A N/A N/A Intra O ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=Interobserver; Intra O=intraobserver Rigor ++

25-24

25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures 25.2.2.2 Donovan SCI Pain Classification System The Donovan Pain Classification system proposes 5 pain types, including segmental nerve and cauda equina, spinal cord, visceral, mechanical and psychogenic. This system combines both mechanistic (e.g. slow fibre conduction from skin) and descriptive factors such as time to onset post-injury, characteristics of pain (e.g. Burning, stabbing, dull aching, etc), pain duration, and factors that make it worse or better (Donovan et al. 1982). Procedure: This information is obtained through a semi-structured interview. Advantages: The patient describes not only the location and degree of pain they are having but also the type of pain and factors that make it worse or improved. It is an open ended style of assessment with less chance to lead the patient towards any specific pain statements. Limitations: Since the classification system does not follow a systematic method for acquiring the data from the patients, it is possible for some sites to be overlooked. This accounts for the relatively poor reliability with a inter rater consistency of only 50-62% (Richards et al. 2002) and modest retest reliability (Putzke et al. 2003). Interpretability: One may put the information into a tabular format for charting or research purposes may be very helpful for interpretation and clarity using the following table.
Pain Type Segmental nerve Cauda Equina Spinal Cord Visceral Mechanical Psychic Time of Onset Post Injury Days to weeks Weeks to months Weeks to months Weeks to months Variable Character Burning Stabbing Tingling Numbness Burning Dull Aching Variable Duration Seconds Constant Constant Variable Variable Aggravating factors Rest Activity Variable Activity Variable Diminishing factors Activity Rest Variable Rest Variable Possible causative factors Slow fibre conduction from skin All fibre conduction within cord Slow fibre conduction from viscera Slow fibre conduction from muscles or ligaments Preoccupation with unpleasant environmental stimuli

Acceptability: This may be a time consuming method for collecting this type of data but some clinicians may really find this type of approach more suitable for the more difficult cases to clarify the problems. This method allows the patients to explain their pain in their own language rather than being forced to pick specific descriptors for their pain. Feasibility: This is an inexpensive pen and paper method, but time consuming method to collect pain data for individuals with complex pain issues. Clinicians may not have time to do this for all SCI pain, which would take about 20-40 minutes, depending upon the number of sites and intensity of pain an individual may have. Clinical Summary: This may be a useful tool to help delineate what type of pain an individual is experiencing and the possible mechanism for that particular pain. Often individuals with SCI have pain in multiple sites with different origins. This break down of pain into the 5 categories would help clinicians work through the problems more methodologically via a semi-structured interview. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR++ N/A N/A N/A N/A N/A Inter O ++ Intra O ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; Inter O=interobserver; Intra O=intraobserver Rigor ++

25-25

25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures 25.2.2.3 Tunks Classification Scheme Classifying the type and location of pain enables better diagnostic and intervention results. The Tunks model identifies 11 types of pain for those with spinal cord injury according to the lesion level (Tunks 1986).
Above the lesion level 1) Myofacial 2) Syringomyelia 3) Non spinal cord At the lesion level 4) Radicular 5) Hyperalgesic border reaction 6) Fracture 7) Myofacial (incomplete lesion) Below the lesion level 8) Diffuse burning 9) Phantom 10) Visceral 11) Myofacial (incomplete lesion)

Procedure: This information is obtained through a semi-structured interview. Advantages: This pain classification allows the clinician to describe the general location and whether the pain differentiates between several types of pain. Limitations: Since the classification system does not follow a systematic method for acquiring the data from the patients, thus making consistency difficult from one time to another or between individuals very difficult. This system is very clinician dependent as it requires considerable knowledge about the various origins of pain to be able to interpret the patients comments into the defined classification scheme. This makes it a very inconsistent measure. The interrater reliability of the Tunks scheme is considered poor (Putzke et al. 2003). Interpretability: This system requires considerable knowledge from the clinician classifying the pain as well as other health care professionals who may be using the information to help with pain management, as it may be difficult to interpret what the classification system means for management of pain. Acceptability: Although this system has merit for giving more categories for which to describe the various types of pain an individual may have, it most likely would be useful for more complex pain cases where more time is allocated towards understanding the origins of the individuals pain. Feasibility: The interview takes 15-20 minutes. No formal training is required but knowledge about neuro anatomy and physiology specifically sensation and theories of pain is an asset. Clinical Summary: This may be a useful tool to help break down of pain into the 11 categories in an open and relatively quick way. However, for the more complex patients, it may take substantially more time than is indicated. It would be an intermediary point for clinicians to identify qualitative elements of pain but it should be augmented using a battery of other tools that would address pain duration, location and intensity in order to provide a complete picture of pain involvement. The disappointing reliability results suggest that identifying two broad types of pain, mechanical and neuropathic may be the best approach until specific diagnostic tools can be developed for each of the purported subtypes of SCI pain (Putzke et al. 2003). Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling + Inter O + N/A N/A N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver

25-26

25.2.2 Sensory Functions and Pain & the Eye, Ear and Related Structures 25.2.2.4 Wheelchair Users Shoulder Pain Index (WUSPI) The WUSPI score is a 15 item questionnaire designed to measure shoulder pain that limits function in individuals who use wheelchairs (Curtis et al. 1995). The scale was modeled on the Shoulder Pain and Disability Index (Roach et al. 1991; Curtis et al. 1995). Modifications made in the creation of the WUSPI included inclusion of common activities performed by the wheelchair user. Content validity was developed by having long term wheelchair users verify important items. It targets activity limitation resulting from shoulder pain on a 10 cm visual analogue scale. It covers 4 subsections which include transfers (4 items), wheelchair mobility (2 items), self-care (5 items), and general activities (4 items). The anchors for the items range from 0 no interference due to pain to 10 completely interferes due to shoulder pain. Procedure: A self report pen and paper format is used. A total score is derived by adding the individual item scores. Total scores range from 0 (no pain) to 150 (extreme pain). Subscale scores can be derived although there is minimal research supporting the use of these. Advantages: The WUSPI is a simple and effective joint specific method of quickly determining the degree of interference due to pain when doing typical tasks of daily living. Limitations: This tool is specific to shoulder pain. It does not obtain information about the type or frequency of pain experienced during the activities. No strategies are suggested to assist with scoring if a person indicates they do not do certain activities (e.g./ load their chair into a car) although it may be possible to use a percentage score out of 150 max rather than using an absolute score to compare between individuals or groups (Sawatzky et al. 2005). No psychometric evidence is available for responsiveness and the majority of research for reliability and validity has been conducted using a mixed sample (not just SCI). The excellent total score and inter items retest ICCs are likely related to baseline and reassessment occurring during the same day. It seems plausible that floor effects are possible for new wheelchair users. Interpretability: Higher scores indicate more limitation due to pain. No information is available regarding norms or meaningful cut scores. Acceptability: The items selected reflect common activities performed by the general population of wheelchairs users across diagnostic classification. The very high internal consistency (alpha =.98) suggests there may be overlap in the items and therefore a shorter scale may be feasible. The WUSPI takes about 5 minutes to complete. Feasibility: The WUSPI requires approximately 10 minutes to score the VAS for each item with a ruler. No special training is required to administer or score the questionnaire. A copy can be obtained from K.A. Curtis the tool developer. Clinical Summary: The WUSPI presents the functional cost of shoulder pain in wheelchair users. It provides unique information that may enable clinicians to consider more detailed assessment based on specific items to explore strategies or equipment may be useful to decrease activity specific pain. Responsiveness data is required prior to recommending the index for clinical evaluation of interventions. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR +++ ++ Concurrent ++ N/A N/A N/A IC +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=Internal Consistency Rigor ++

25-27

25.2.3 Functions & Structures of the Cardiovascular, Haematological, Immunological and Respiratory Systems 25.2.3.1 Six-Minute Arm Test (6-MAT) The Six-Minute Arm Test is a new test that assesses cardiovascular fitness in people with SCI. It involves 6 minutes of submaximal arm ergometry at a constant power output (PO) (Hol et al. 2007). This single stage test is simple and quick to administer clinically. Procedure: Through the use of guidelines provided by Hol et al. (2007), clinicians can determine the appropriate PO. Baseline outcome variables are determined by recording the clients exercising heart rate during the final 30 seconds of the 6-MAT, and taking their ratings of perceived energy (RPE) at the end of the test. (Hol et al. 2007) The measure should be readministered at the same PO for follow up tests, including those to assess changes resulting from cardiovascular fitness interventions. Equipment for the 6-MAT includes an arm ergometer, heart rate monitor, and an RPE scale. Advantages: The 6-MAT is a practical test that can be administered to all fitness levels. Its reliability and concurrent validity for assessing cardiovascular fitness in people with SCI is excellent (Hol et al. 2007). There are clinical guidelines for determining submaximal PO for subjects. Limitations: Tests for responsiveness are needed to enhance the instruments use as a clinical tool for measuring cardiovascular fitness in persons with SCI. In the initial study by Hol et al. (2007), one subject with T3 paraplegia experienced self-reported, mild autonomic dysreflexia. Interpretability: After a fitness intervention or simply as a follow up measure, results from readministering the 6-MAT can determine changes in fitness level. Decrease in heart rate and/or RPE may indicate an increase in cardiovascular fitness, whereas an increase in heart rate and/or RPE may indicate a decrease in cardiovascular fitness (Hol et al. 2007). Acceptability: All subjects in the preliminary study were able to complete the 6-MAT. It takes six minutes to complete can be administered to people of all fitness levels. Feasibility: The equipment required to conduct the 6-MAT is minimal (arm ergometer, heart rate monitor, RPE scale), and all pieces are available in most rehabilitation settings. See Hol et al (2007) for a complete description of the exercise protocol. Clinical Summary: This performance oriented test can be quickly conducted in most settings and the results provide immediate feedback about the fitness of the individual using an upper extremity protocol. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR +++ ++ Criterion +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test

25-28

25.2.3 Functions & Structures of the Cardiovascular, Haematological, Immunological and Respiratory Systems 25.2.3.2 Wingate Anaerobic Testing (WAnT) The WAnT is a method of assessing muscle power. It involves a 30 second maximal effort trial on a leg or arm ergometer. It was first validated in able bodied individuals to use as a predictor of physical performance of anaerobic activities (Ayalon et al. 1974; Bar-Or et al. 1977). Leg WAnT was closely associated with 40 m running (r=0.84) and running speed (r=0.85) (Bar-Or & Inbar 1978). Arm and leg WAnT correlated with swimming performance (Hawley & Williams 1992). Arm WAnT has also been used in persons with paraplegia to compare to performance of upper limb anaerobic tasks such as transferring in and out of the car (r=0.81) and 26m wheelchair sprints (r=0.70) (Bar-Or et al. 1976). Procedure: The WAnT requires the use of an arm ergometer or an adapted leg ergometer suitable for arm use that allows for consistent resistance to be applied. The ergometer system is typically linked to a computer with specific software to calculate peak power based on resistance and speed (the highest average power output at any given 5 sec period) and mean power (average power output over a 30 sec trial). The individual typically free wheels with no resistance for 3-5 minutes, after which they increase the cadence to 100 rev/min. The resistance load is then applied (3.5% body weight) and the subject pedals as fast as they can for 30 seconds, followed by a 1-2 minute cool down without resistance. Advantages: Without a test like this, there is no standardized test, device or protocol to monitor upper extremity strength and power. Most assessments look at aerobic function rather than anaerobic tasks. This test has been shown to be valid and reliable across a wide range of able bodied and disabled individuals, including those with paraplegia (Jacobs et al. 2003). Limitations: This test requires significant financial investment (ergometer, computer and software). Interpretability: The outcome measures (peak and mean power) are easily interpreted as the higher the output, the greater strength the individual exhibits. Norms for non-disabled individuals (adults & children) are available for comparison (Jacobs et al. 2003; 2005). Acceptability: Since the test is quick (max. 8 minutes, including free wheeling) and the number of repetitions are relatively low, it generally does not contribute to overuse injuries in the wrist or shoulder. If the person already experiences symptoms of these injuries, this test may trigger pain. Feasibility: It is a relatively easy and inexpensive test to administer with appropriate equipment available; however, initial expenditure is significant. It does not require a highly trained individual to implement the test. Clinical Summary: The WAnT is a good measure of upper extremity strength and power that does link to other functional tasks such as transferring in and out of the car or wheeling up ramps/hills. It is also a well established protocol that has been used in many populations, and thus, comparisons are possible. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR +++ ++ Content +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test

25-29

25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures 25.2.4.1 The American Spinal Injury Association: International Standards for Neurological Classification of Spinal Cord Injury The International Standards for Neurological Classification of SCI (ASIA 2002) is a multidimensional approach to categorize motor and sensory impairment in individuals with SCI. Currently in its 6th edition, it identifies sensory and motor levels indicative of the most rostral spinal levels demonstrating unimpaired function. Twenty-eight dermatomes are assessed bilaterally using pinprick and light touch sensation and 10 key muscles are assessed bilaterally with manual muscle testing. The results are summed to produce overall sensory and motor scores and are used in combination with evaluation of anal sensory and motor function as a basis for the determination of the ASIA Impairment Scale (AIS). Procedure: A clinical examination is conducted to test whether sensation is 0=absent, 1=impaired or 2=normal. Muscle function is rated from 0=total paralysis to 5=(normal), i.e. active movement, full ROM against significant resistance. The presence of anal sensation and voluntary anal contraction are assessed as a yes/no. Bilateral motor and sensory levels and the AIS are based on the results of these examinations. A more accurate representation of motor function has been demonstrated when overall ASIA motor scores are divided into separate upper and lower limb scores (Marino & Graves 2004; Graves et al. 2006). Advantages: This is an internationally recognized standard which is widely used for research and clinical purposes. Its historical development and continued evolution are well grounded in expert clinical consensus thereby ensuring high content validity (Cohen et al. 1996). In addition, there is evidence that ASIA motor scores collected relatively early following injury have some predictive validity in explaining functional outcomes (Lazar et al. 1989; Blaustein et al. 1993). Limitations: ASIA scores have been assessed as having only moderate inter-rater reliability (Priebe & Waring 1991; Jonsson et al. 2000) with even poorer results following sensory examinations or associated with specific cases of incomplete SCI (Priebe and Waring 1991; Cohen et al. 1996). Inter-rater reliability for assignment of motor and sensory levels and AIS classifications is less than optimal. Enhanced training methods and materials have been recommended to improve inter-rater reliability (Priebe & Waring 1991; Cohen et al. 1998; Jonsson et al. 2000) Interpretability: The AIS scores are clearly defined and understood by most clinicians. The AIS (5 point ordinal scale), based on the Frankel scale (Frankel et al. 1969), classifies individuals from A (complete SCI) to E (normal sensory and motor function). Preservation of function in the sacral segments (S4-S5) is key for determining the AIS. Acceptability: The assessment is generally well tolerated although sensory testing can be problem with severe hypersensitivity and testing for voluntary anal contraction can result in the stimulation of a bowel movement. Feasibility: Takes approximately 20 minutes to conduct/score. Training is mandatory and no specialized equipment is required. For a copy see www.asiaspinalinjury.org/publications/2001_Classif_worksheet.pdf#search=%22ASia%20motor %20score%22 Clinical Summary: ASIA scores are considered essential when classifying persons with SCI as to their neurological status. ASIA scores are routinely collected in administrative data bases such the Model Systems and CIHI National Rehabilitation Reporting System. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ TR ++ ++ Construct +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test

25-30

25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures 25.2.4.2 Ashworth and Modified Ashworth The Ashworth measure of spasticity was developed as a simple clinical classification to assess the anti-spastic effects of carisoprodol in multiple sclerosis (Ashworth 1964). It is a 5-point nominal scale using subjective clinical assessment of tone ranging from 0 no increases in tone to 4 limb rigid in flexion or extension [abduction/adduction]. An additional grade was added (1+) for the Modified Ashworth (MAS) to enhance sensitivity and accommodate hemiplegic patients who typically graded at the lower end of the scale (Bohannon & Smith 1986). These measures have been adopted for measuring spasticity in a variety of other indications including spinal cord injury (Haas et al. 1996), although some have noted that there are differences in the characteristics of spasticity with different etiologies (Noth 1991; Lechner et al. 2006). Procedure: A clinical examination performed on a relaxed supine patient. The muscle is assessed by rating the resistance to passive range of motion (ROM) about a single joint. Advantages: Both measures have been used for clinical and research purposes. The MAS correlates well with a self-rating visual analogue scale of spasticity (Skold 2000) and the Ashworth correlates strongly with the patellar tendon tap and the adductor tap (Priebe et al. 1996). The Ashworth correlates well with the Spinal Cord Assessment Tool for Spastic Reflexes (Benz et al. 1995) which measures different types and severity of spastic reflexes in SCI. Limitations: These measures assess single-joint resistance to passive ROM or a velocity dependent stretch reflex. They do not address spasm frequency or severity, nor do they differentiate between phasic and tonic components of spasticity (Priebe et al. 1996). The observation of resistance is subjective and requires experienced clinical judgment. Reliability varies muscle to muscle (reliable in plantar flexors, reliable in adductors; Haas et al. 1996). Interpretability: The Ashworth scale is easily interpretable with discrete categories that reflect clinical experience. The MAS adds an additional grade at the lower end of spasticity. Acceptability: Well accepted and tolerated by patients as the procedures consist of range of motion movements similar to non-assessment ROM movements. Feasibility: These measures are easily administered during routine clinic visits. No specialized equipment is required. Clinical experience increases inter-rater reliability (Bohannon & Smith 1987; Haas et al. 1996). Standardization of speed of movement in the assessment is required since spasticity is velocity dependent (e.g. use of metronome is helpful). Some consider the Ashworth to be of limited use in the assessment of spasticity in the lower limb of patients with SCI without this standardization (Haas 1996). Clinical Summary: These measures are the clinical gold standard for assessing spasticity in people with SCI. However, it should be noted that spasticity is a multi-faceted construct with individual components of spasticity weakly related to each other suggesting that different clinical scales measure unique aspects of spasticity (Priebe et al. 1996). Therefore, the overall construct is best measured with an appropriate battery of tests including the Ashworth Scale. Psychometric Summary
Rigor +++ Reliability Results TR+++ Overall TR++ adductors TR+ plantar flexor Rigor +++ Validity Results Ashworth Construct ++ Rigor +++ Responsiveness Results Floor/ceiling + N/A

MAS TR+ Overall +++ Construct ++ +++ + TR+++ With velocity standardization TR++ adductors TR+ plantar flexor Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test +++

N/A

25-31

25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures 25.2.4.3 Penn Spasm Frequency Scale (PSFS) The Penn Spasm Frequency Scale (PSFS) is self report measure of the frequency or reported muscle spasms (Penn et al. 1989; Priebe et al. 1996) which is commonly used to quantify spasticity (Benz et al. 2006). The PSFS is a 2 component self-report scale developed to augment clinical ratings of spasticity and provide a more comprehensive understanding of an individuals spasticity status. The first component is a 5 point scale assessing the frequency with which spasms occur ranging from 0 = No spasms to 4 = Spontaneous spasms occurring more than ten times per hour. The second component is a 3 point scale assessing the severity of spasms ranging from 1 = Mild to 3 = Severe. The second component is not answered if the person indicates they have no spasms in part 1. Procedure: Patients report their perceptions of spasticity with regards to frequency and severity. Advantages: This measure is simple and appropriate to the clinical setting and does not require specialized equipment to perform. Validity has been partially established with adequate correlations with other clinical tools such as the Ashworth scale and the Spinal Cord Assessment Tool for Spastic Reflexes (SCATS) (Benz et al. 2005). Although not directly tested, responsiveness has been demonstrated in several studies employing this measure within a test battery to assess spasticity (Gianino et al. 1998; Aydin et al. 2005; Boviatsis et al. 2005). Limitations: The scale is subject to concomitant subclinical conditions such as fullness of the bladder, development of a symptomatic urinary tract infection, anxiety level, room temperature, subject comfort, and many other conditions. Although not directly tested, test-retest reliability and repeatability has been reported as highly variable (Priebe et al. 1996) since test administration timing is not standardized and subtle changes in underlying conditions affecting spasticity may not be considered at the time of test administration. Interpretability: The specific grades simple to interpret although no standardization of time frame is specified for test administration (i.e. within the last hour, day, week, etc.) and specific grades for spasm severity may mean different things to different people. Acceptability: The PSFS presents minimal patient burden and is easy for them to understand. Feasibility: The test is quick to administer and score. No training is required however understanding and experience of spasticity likely improves its utility. . Clinical Summary: These self-report measures of spasticity correlate only moderately with clinical examination suggesting that the elements of spasticity evaluated in the physical examination do not represent what is important to persons with SCI spasticity (Priebe et al. 1996). To more fully understand spasticity as experienced by the client, self-report spasticity measures are an important adjunct to other clinical measures of spasticity. However, the PSFS is suggested to have only modest repeatability and test-retest reliability (Priebe et al. 1996) and requires further investigation taking into consideration the slight changes in the patients concomitant subclinical condition(s) and the standardization of test administration timing. In addition, the PSFS was found to correlate highest with the SCATS clonus measure as compared to the flexor and extensor spasm components of SCATS suggesting that the role of clonus most represents the clients perception of spasticity (Benz et al. 2005). This measure is easily administered during routine clinic visits. Psychometric Summary:
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Construct ++ N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-32

25.2.4 Neuromusculoskeletal and Movement-Related Functions & Structures 25.2.4.4 Surface Electromyography (sEMG) Surface electromyography (sEMG) is a noninvasive technique used to measure muscle activity (both voluntary and involuntary) in individuals with neuromuscular diseases (Pullman et al. 2000). Procedure: Surface electrodes are placed on the skin overlying the muscles of interest. Patients are instructed to voluntarily activate lower limb muscles to provide either maximal muscle strength or to perform simple movements (e.g. ankle flexion/extension). Advantages: These measures are simple to apply and complementary to the clinical evaluation by providing objective and quantifiable non-ordinal measures. Calancie et al. (2001) showed reasonable validity by analyzing the correlations between the sEMG recordings and MMT both for the upper and lower limb muscles in patients with acute and subacute SCI. Interestingly the correlation coefficients were lower in the acute than subacute stage of SCI. The studies performed by Lim et al. (2005) and Lim & Sherwood (2005) revealed high correlation coefficients to the clinical motor testing using the ASIA motor score for face validity and demonstrated good to very good retest reliability using Intra-class correlation (ICC) analysis based on same day and 1 week retest. Limitations: The extrapolation of sEMG values to absolute forces and the comparison between subjects is limited and does not allow direct comparisons. While the individual follow up of motor recovery can be performed the measures are of limited value to precisely diagnose motor impairments. The measures are not specific to the kind and timing of neurogenic lesion (no distinction between the affect on the central or peripheral nervous system and acute versus chronic). The control of the movement performance either due to motivation and the desired kinematics is difficult to achieve and other confounding factors as pain or non-neuronal complications (muscle tendon joint effects) have to be carefully excluded. Interpretability: The data can be quantified however the interpretation is not standardized. No normative values exist. Acceptability: Minimal burden for patients. The technique is tolerated well by patients and is much less intrusive than the gold standard (needle EMG). Feasibility: An EMG study takes approximately 15-20 minutes to complete however times vary based on the number and complexity of the muscle groups studied. An EMG can range in cost from several hundred to over a thousand dollars depending on features. Special training is mandatory to conduct and interpret the results. Clinical Summary: sEMG recordings can complement the clinical examination specifically by providing objective and quantifiable measures of muscle activity. They have been shown to be valid in comparison to the clinical testing of motor strength and might be of highest value to monitor motor recovery in incomplete SCI. As these measures need special training and equipment they will be most suitable in the frame of clinical studies rather than for clinical day to day routine. The proven re-test reliability and validation makes them a valuable asset to the clinical examination by providing more objective and statistically applicable data. So far sEMG has only been applied by a few specialized research groups and independent replications and confirmations of clinical usefulness need to be done. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Construct ++ N/A N/A N/A Concurrent +++ SS +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test retest reliability; SS=Sensitivity/Specificity Rigor ++ Rigor ++ Reliability Results TR ++

25-33

25.2.5 Functions of the Skin and Related Structures 25.2.5.1 Abruzzese Scale The 7 domain, 9-item, Abruzzese scale is based on the Norton and Gosnell scales, and is designed to assess the risk of pressure sore development in acute and long-term care settings (Abruzzese 1985). The domains include: general health, mental status, activity, mobility, continence, nutrition (a. oral nutrition and b. oral fluid intake), and predisposing disease. Procedure: Raters indicate the client status based on personal observation or chart review. The items are scored on a 4-point scale, either 0 3, or 0,1,4,6 depending on the item, with higher scores indicating increased risk of developing a pressure ulcer. Scores are summed to produce an overall score between 0 (best prognosis) and 30 (worst prognosis). Advantages: The instrument is quick to complete and easy to score. Limitations: Response descriptions for some scale items are very brief. Validity evidence for the Abruzzese scale was reported in only one study and results were poor (Salzberg et al. 1999). Reliability and responsiveness with individuals with SCI still need to be tested. Studies that evaluate the effectiveness of the tool for pressure-ulcer prevention are also needed. Interpretability: A cutoff score 12 is suggested as the cut score to identify individuals at risk for developing pressure ulcers. One study found the sensitivity to be 21.8% and specificity 84.6% (Salzberg et al. 1999). Acceptability: Administration time is brief and the measure is well accepted by persons with disabilities. There is low respondent burden for the Abruzzese Scale. No alternative formats or version in languages other than English were found. Feasibility: The scale takes around 5 10 minutes to complete. There is no indication that formal training is required. Clinical Summary: Validity evidence is poor and there is a general lack of reliability and responsiveness evidence. Other generic scales, such as the Braden or SCI specific scales such as the SCIPUS or SCIPU-A are recommended. Psychometric Summary
Reliability Rigor Results N/A N/A Responsiveness Results Rigor Results Floor/ceiling Construct + N/A N/A N/A SS + Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; SS=sensitivity/specificity. Validity Rigor +

25-34

25.2.5 Functions of the Skin and Related Structures 25.2.5.2 Braden Scale The Braden Scale is an assessment tool for determining a patients risk level for incurring skin breakdown. It has been tested in acute care and long-term-care settings (Bergstrom et al. 1987). Items were developed based on expert consensus and predictive validity has been studied in several acute care settings with good sensitivity and specificity demonstrated (Bergstrom et al. 1987). The scale was developed based on a conceptual schema of pressure sore development which identified a variety of pressure and tissue tolerance issues that predispose individuals to develop pressure ulcers. A patient is evaluated in six domains (one item per domain): (1) sensory perception, (2) moisture, (3) activity, (4) mobility, (5) nutrition, and (6) friction and shear and receives a score between 1-3 or 4 point ordinal scale for each domain. Procedure: Raters indicate client status in the five domains (which could be based on personal experience or chart review). Each domain is given a rating of 1-3 or 4 based on an ordinal scale based on descriptive criteria provided on the scoring sheet, which are summed for a total of between 6 (worst prognosis) to 23 (best prognosis). Advantages: A commonly used tool, which has been used extensively in research. Familiarity with the scale facilitates communication of findings. The test is quick to administer, readily available and alternative cut-off scores have suggested depending on the population. Limitations: The scale omits items that Salzburg et al. (1999) found to be important predictors of pressure ulcer development for people with SCI and includes three factors (sensory perception, mobility and nutritional variables) that were not significantly related to pressure ulcer development for individuals with SCI. The reliability of the scale has been demonstrated in a variety of settings (Bergstrom et al. 1987), but not specifically with individuals with SCI. Cut-off scores have been shown to fluctuate between populations, and so the original cut off scores between groups do not seem appropriate for individual with SCI (Salzberg et al. 1999). Wellard & Lo (2000) found that Spearmans correlations comparing ulcer severity scores and scores on the Braden were not significant. Interpretability: Although a cut off score of 16 was originally suggested as indicative of those who develop a pressure sore (100% sensitivity and 64% sensitivity) (Bergstrom et al. 1987), 11 or less has been suggested for an ICU trauma population and less than or equal to 10 has been suggested for individuals with SCI (74.7% sensitivity and 56.6% specificity) (Salzberg et al. 1999). Scoring instructions are relatively detailed. Free pressure ulcer prevention protocols are available, based on Braden Scale scores (www.Bradenscale.com). Acceptability: There is minimal examiner and no respondent burden as the patient is not asked to perform any special activities. The scale has been translated into many languages. Feasibility: The scale takes 5-10 minutes and no formal training is required. The scale, scoring information (free) and a video tape manual ($150 US) are available at <www.bradenscale.com>. Clinical Summary: The Braden scale is quick and easy to use, although there may be issues with interpretation of the scores. The scale provides predictive information and evidence of validity is adequate, but there has been no reliability or responsiveness testing with these individuals with SCI. The Agency for Health Care Policy and Research (AHCPR) (1992) recommended the use of either the Braden or the Norton scales for the prevention of pressure ulcers for best practice. Pressure ulcer prevention protocols, which describe appropriate interventions based a patients Braden scale score are also available. These include suggestions about how to manage nutrition and deal with potential friction or shear problems. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Construct + N/A N/A N/A Predictive ++ SS ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; SS=Sensitivity/Specificity Rigor + Rigor ++ Reliability Results +++

25-35

25.2.5 Functions of the Skin and Related Structures 25.2.5.3 Gosnell Measure The Gosnell scale was developed to identify individuals living in extended care and over the age of 65 who were at risk for developing a pressure ulcer (Gosnell 1973). Items were identified based on research by Norton who examined indicators of pressure ulcer development. It therefore includes four of the five domains/items included in the Norton scale, but omits general physical condition. Every patient is evaluated on five domains: 1) mental status, 2) continence, 3) mobility (the amount and control of movement of one's body), 4) activity (ability to ambulate) and 5) nutrition ( the process of food intake). In addition the evaluation includes recording of: vital signs (which includes temperature pulse respirations and blood pressure), skin condition (which includes appearance, skin tone and sensation) and medications but these are not scored. Items from the 5 domains are scored on domain specific ordinal scales from 1 to 4 based on the descriptors provided. Procedure: Raters indicate client status on each of the items (which could be based on personal experience or chart review). Scales are scored based on descriptive criteria provided on the scoring sheet. This produces a summary score from between 5 (worst prognosis) to 20 (best prognosis). Advantages: The test is quick to administer, readily available and is commonly used. Limitations: The scale omits items such as pulmonary disease, serum creatinine > 1.0, extent of paralysis, albumin < 3.4 or T, protein < 6.4, autonomic dysreflexia or severe spasticity, age, tobacco use/smoking, disease, cardiac disease or glucose > 110 mg/dl, renal disease, living in a nursing home or hospital, and hematorcrit <36.0% that Salzburg et al. (1996 & 1999) found to be important predictors of pressure ulcer development for people with SCI in acute and rehabilitation settings. No information on the reliability of the scale with any population could be located. Interpretability: There are issues with the interpretability of the measure given lack of detail in how to evaluate additional findings. Using a retrospective logistic regression analysis of hospital data from 226 patients, Salzberg (1999) found that the Gosnell had 18.4% sensitivity and 90.4% specificity for predicting the development of pressure ulcers in individuals with SCI within the first 30 days of admission. Salzberg did not indicate what cut-off score was used to achieve this level. Salzberg found correlations between scores on the Gosnell and stage of first pressure ulcer and number of pressure ulcers of r= 0.241 and 0.297 respectively. Acceptability: The score is easy for a health care provider to calculate, but additional items such as the assessment of skin condition may require additional patient assessment. Items on the scale would not represent a burden to either patients or researchers, if this data was already collected as part of the normal plan of care. However, if these items needed to be performed as additional procedures, however, it would represent considerable rater burden and some respondent burden. No different formats or translation in languages other than English could be located. Feasibility: Scoring takes 5-10 minutes and no special training is required. The scale is readily available from the original article and electronically. Clinical Summary: The Gosnell scale is a quick and easy to use, but validity evidence is poor with persons with SCI, and there has been no reliability or responsiveness testing. In light of these findings other generic scales (such as the Braden) or SCI specific scales such as the SCIPUS or SCIPUS-A would be recommended. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Predictive + N/A N/A N/A SS ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; SS=Sensitivity/Specificity Rigor N/A Rigor + Reliability Results N/A

25-36

25.2.5 Functions of the Skin and Related Structures 25.2.5.4 Norton Measure The 5 item Norton scale was the first pressure ulcer risk assessment that was developed and was intended for use with a geriatric hospital population (Norton et al. 1962). The measure was developed based on the researchers clinical expertise. Five domains relevant to skin condition are considered: (1) physical condition, (2) mental condition, (3) activity, (4) mobility and (5) incontinence. They are measured on an ordinal scale from 1 to 4. Procedure: Raters indicate client status based on personal observation or chart review. Scales are scored on a domain specific ordinal scale from 1 to 4. Each item comes with standardized descriptive criteria recorded on the score sheet. A summary score ranging from 5 (worst prognosis) to 20 (best prognosis) is calculated. Advantages: The test is quick to administer, readily available. Ash (2002) indicated the Waterloo, Braden, Norton and SCIPUS-A all had similar moderate predictive power. The Norton is a commonly used scale with a variety of populations. Limitations: The scale omits items that Salzburg et al. (1996; 1999) found to be important predictors of pressure ulcer development for people with SCI such as pulmonary disease, serum creatinine > 1.0, extent of paralysis, albumin < 3.4 or T, protein < 6.4, autonomic dysreflexia or severe spasticity, age, tobacco use/smoking, disease, cardiac disease or glucose > 110 mg/dl, renal disease, living in a nursing home or hospital, and hematorcrit <36.0%. The reliability of the scale has not been demonstrated with a SCI population. Descriptors for item scoring are very brief (Wellard & Lo 2000). Salzberg (1999) found that the Norton was the worst measure for predicting stage and number of pressure ulcers in individuals with SCI during the first 30 days of admission compared to the SCIPUS, SCUIPUS-A, Braden, Gosnell and Abruzzese. Salzberg (1999) found correlations between scores on the Norton and stage of first pressure ulcer and number of pressure ulcers of r= -0.192 and -0.197 respectively. Interpretability: A cut-off score of 14 was suggested as a cut off score to identify individuals at risk for developing pressure sores, however, no evidence to support the use of this value (no sensitivity / specificity data) was provided (Norton et al. 1962). Because scoring descriptors are minimal, they may be subject to misinterpretation. Acceptability: Scoring and administration is easy. There is no patient burden. No alternative formats or version in languages other than English could be located. Feasibility: The Norton scale takes 5-10 minutes to administer and score. No training is required however knowledge of the area of wound care may is readily available for free on line or from the original publication. Clinical Summary: The Norton scale is a quick and easy to use, although there may be issues with interpretation of the scores. Validity evidence is poor and there has been no reliability or responsiveness testing with these individuals with SCI. Use of the Norton Scale is recommended by the Agency for Health Care Policy and Research (1992) but In light of the above findings other generic scales (such as the Braden) or SCI specific scales such as the SCIPUS or SCIPUS-A would be recommended. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Predictive + N/A N/A N/A Construct ++ SS ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; SS=Sensitivity/Specificity Rigor N/A Rigor ++ Reliability Results N/A

25-37

25.2.5 Functions of the Skin and Related Structures 25.2.5.5 Spinal Cord Injury Pressure Ulcer Scale (SCIPUS) Measure The SCIPUS scale was developed as a measure of the risk for pressure ulcer development for individuals with spinal cord injury who are in a rehabilitation centre (Salzberg et al. 1996). Items for the scale were identified based on statistical analysis of data from 176 individuals with SCI, which compared development of pressure ulcers with demographic variables and potential pressure ulcer risk factors. Every patient is evaluated in fifteen domains (one item per domain): 1) level of activity, 2) mobility, 3) complete SCI, 4) urine incontinence or constantly moist, 5) autonomic dysreflexia or sever spasticity, 6) age, 7) tobacco use/smoking, 8) pulmonary disease, 9) cardiac disease or glucose > 110 mg/dl, 11) renal disease, 12) impaired cognitive function, 13) in a nursing home or hospital, 14) albumin < 3.4 or T, protein < 6.4 and 15) hematorcrit <36.0%. Most items are scored dichotomously as either present or absent, but 4 items have three response options. Procedure: Raters indicate client status based on personal knowledge of the of the client or chart review. Dichotomous items are given a weighted score of 0 when absent and 1 or 2 when present and non dichotomous items are given a weighted score based on the descriptive criteria provided on the scoring sheet. For example, the presence of pulmonary disease (ICD codes 450, 460-519 & 796.0) = a score of 2. By adding domain scores together a summary score is calculated which ranges from 0 = best prognosis to 25 = worst prognosis. Advantages: The content validity for the tool is likely the best for SCI as each of the items were identified based on data from individuals with spinal cord injury and needed to 1) demonstrate a significant statistical association with pressure ulcer development, 2) improve prediction, 3) be supported by the literature and 4) be biologically plausible. Correlations between scores on the SCIPUS and stage of first pressure ulcer and number of pressure ulcers are r= 0.343 and r= 0.339 respectively for individual with SCI in the first 30 days of admission. Limitations: Although the SCIPUS is reported to be the best measure for this population (Salzberg et al. 1996), the factors were identified with the same retrospective data that was used to determine the measures sensitivity and specificity, which may artificially inflate these numbers. The reliability of the scale has not been demonstrated with a SCI population. The scale was developed specifically for use in rehabilitation centers and has not been tested in community dwelling populations. The rationale for item scores is not well described. For example, the authors do not indicate why the presence of pulmonary disease receives a score of 2, whereas impaired renal function receives a score of 1. Interpretability: A cut off score of 6 has a sensitivity of 75.6% and a specificity of 74.4%. (Salzberg et al.1996). Response category scoring descriptors are operationalized in detail as noted in the level of activity example above. Acceptability: There is minimal burden related to administering or scoring the scale if tests for diabetes, albumin and hemocrit are already part of the patients medical record. Otherwise the blood tests required would be invasive and create respondent burden. No different formats or alternate language versions could be found. Feasibility: The SCIPUS takes 10-15 minutes to administer as long as laboratory data is already available otherwise additional time and burden is required. No special training is required to administer or score. The scale and its operational scoring definitions are available in the article that describes its development and testing (Salzberg et al. 1996). Clinical Summary: The SCIPUS scale is a quick and easy to use measure (if laboratory data is already available) that provides predictive information about risk of pressure sore. Despite the good content validity, other validity evidence is only adequate, and there has been no reliability or responsiveness testing. Additional reliability and responsiveness data is necessary. Psychometric Summary:
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Predictive ++ N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-38

25.2.5 Functions of the Skin and Related Structures 25.2.5.6 Spinal Cord Injury Pressure Ulcer Scale Acute (SCIPUS-A) The SCIPUS-A scale was developed as a measure of the risk for pressure ulcer development for individuals with spinal cord injury who are in the acute phase of injury (within 30 days of admission) (Salzberg et al. 1999). Items for the scale were identified based on statistical analysis of data from 226 individuals with SCI, which compared development of pressure ulcers with demographic variables and 50 potential pressure ulcer risk factors. It consists of 8 items evaluating eight domains which include: 1) extent of paralysis, 2) moisture, 3) serum creatinine, 4) incontinence, 5) albumin, 6) mobility, 7) pulmonary disease, and 8) level of activity. Response categories are either dichotomous (present/ absent (score = 1 to 2 or 0, respectively) or have 3 to 5 options. For example, for extent of paralysis, none (i.e. no paralysis) is awarded a score of 0, paraparesis =1, quadriparesis =4, paraplegia = 8 and quadriplegia = 10. Procedure: Raters indicate client function status based on personal experience or chart review. Scales are scored based on descriptive criteria provided on the scoring sheet. As noted above, responses to each item are awarded a value between 0 to 1-10 and these are added together to create a summary score of 0 = best prognosis to 25 = worst prognosis. Advantages: The content validity for the tool is high as it was designed for individuals with SCI. Domains were identified from data analysis from 226 individuals with spinal cord injury and needed to 1) demonstrate a statistical significant association with pressure ulcer development, 2) improve prediction, 3) be supported by the literature and 4) be biologically plausible. Weighting for factors was identified based on their regression coefficients. The SCIPUS-A had the highest correlations, for construct validity, compared to the SCIPUS, Braden, Gosnell, Abruzzese & Norton with this population (Salzburg et al. 1999). Limitations: Although the SCIPUS-A is reported to be the best measure for this population (Salzberg et al. 1999), the same retrospective data was used to determine the measures sensitivity and specificity and identify the domains used, which likely contributed to the higher values compared to other measures. As well, Ash (2002) indicated the Waterloo, Braden, Norton and SCIPUS-A all had similar moderate predictive power (however, the SCIPUS would have been more appropriate given the population he studied). Salzberg et al. (1999) indicated for individuals with SCI and a cut-off score of 10 the Braden scale had a 74.7% sensitivity and 56.6% specificity, which is only marginally worse than that of the SCIPUS-A (see below). Interpretability: Sensitivity and specificity percentages are provided at a variety of cut-off scores. A cut-off score of 18 has a sensitivity of 88.5% and a specificity of 59.0% for example. Response category descriptors are operationalized in detail as noted in the extent of paralysis example above. Acceptability: There is minimal burden related to administering or scoring the scale if tests for albumin and serum creatinine are already part of the patients medical record. Otherwise the blood tests required would be invasive and create respondent burden. No different formats or alternate language versions could be found. Feasibility: The SCIPUS takes 5-10 minutes to administer as long as laboratory data is already available otherwise additional time and burden is required. No special training is required to administer or score. The scale and its operational scoring definitions is available in the article that describes its development and testing (Salzberg et al. 1999). Clinical Summary: The SCIPUS-A scale is a quick and easy to use measure (if laboratory data is readily available) that provides predictive information about risk of pressure sore development. Despite the good content validity, other validity evidence is only adequate, and there has been no reliability or responsiveness testing with these individuals with SCI. Additional reliability and responsive data is necessary for this tool. Psychometric Summary:
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Predictive ++ N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-39

25.2.5 Functions of the Skin and Related Structures 25.2.5.7 Stirlings Pressure Ulcer Severity Scale The Stirlings Pressure Ulcer Severity Scale is used to describe the severity of pressure ulcers. The scale was derived from previously published UK scales developed by a consensus panel of national tissue viability experts (Pedley 2004). This observational scale has 5 stages ranging from stage 0 to stage 4, where 0 = no clinical evidence of a pressure sore, 1 = discoloration of the intact skin, 2 = partial-thickness skin loss or damage involving epidermis and/.or dermis, 3 = full-thickness skin loss involving damage or necrosis of subcutaneous tissue but not extending to underlying bone, tendon or joint capsule, and 4 = full-thickness skin loss with extensive destruction and tissue necrosis extending to bone, tendon or capsule. The scale has several variations, the most common being the 1 and 2-digit scales, where the nature and severity of the ulcer are graded. Procedure: Using the 1-digit scale, raters indicate the severity of the ulcer from 0 to 4, according to the stage definitions, whereas those using the 2-digit scale, rate the severity of the ulcer according to the stage definitions in addition to more specific descriptors. For example, for stage 0 there are three descriptors, 0.1 = normal appearance, intact skin, 0.2 = healed with scarring, and 0.3 = tissue damage, but not assessed as a pressure sore (Pedley 2004). Advantages: The Stirling scale is easy to use, has good ulcer description and good choice of descriptors. The descriptors in the 2-digit version enable a more accurate grading in comparison to other pressure ulcer severity scales (Pedley 2004). Limitations: Pressure ulcer grading scales are open to bias and subjectivity (Pedley 2004). Interpretability: The scale has 5 stages (0-4), where zero represents no clinical appearance and four indicates full thickness skin loss with extensive destruction extending to bone, tendon or joint capsule (Wellard 2000). The two digit version includes more detailed ulcer descriptors. Differentiation between the grade descriptors depends on clinical identification of the tissues. Differentiation requires not only observing the wound bed, but also having sufficient knowledge to distinguish the different tissue layers. The higher the ulcer grade, the greater the severity of the ulcer. Acceptability: The stage 1 descriptor of the scale focuses on skin discoloration. In dark skinned patients criteria may be masked by the skin pigment, and thus detection of stage 1 pressure damage may be lower in this patient group. The validity of the Stirling scale when used with dark-skinned patients is therefore questionable. Feasibility: To ensure basic understanding of skin and soft tissue anatomy and relevant physiological concepts, practitioners should undergo training prior to using the scale. The 2-digit and 1-digit scales can be found in Pedley 2004. No information was found on how long it takes to use the scale Clinical Summary: Observational pressure ulcer grading scales are open to bias and subjectivity resulting from individual interpretations. These interpretations reflect clinician knowledge and ability to identify anatomical structures and changes. Low levels of interrater reliability are therefore not surprising. The 2-digit version has greater range of descriptors than the 1-digit version, which makes grading easier and provides a more accurate and clinically meaningful description of the damage (Pedley 2004). Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ InterO++* + Construct +** N/A N/A N/A + InterO+** Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; InterO=Interrater reliability. * = 2-digit scale ** = 1-digit scale

25-40

25.2.5 Functions of the Skin and Related Structures 25.2.5.8 Waterlow Scale The Waterlow scale (Waterlow 1985) is a risk for pressure ulcer development assessment tool that was created to provide better sensitivity and specificity than the Norton by increasing the number of items used (Wellard & Lo 2000). Every patient is evaluated on eight domains(using 8 items): 1 ) age, 2) sex, 3) body build, 4)appetite, 5) continence of urine and feces, 6) mobility, 7) skin appearance in risk areas and (8) special risks (disorders associated with tissue malnutrition, neurological deficits, medication, recent surgery or trauma). Procedure: Raters indicate client status based on personal knowledge of the client or chart review. Items are scored as either dichotomous (yes/no) or on domain specific scales that range from 0-1 to 3-5. Domains are scored based on descriptive criteria provided on the scoring sheet (for example, for body build, average=0, above average =1, obese = 2 below average = 3) and totaled to produce a summary score from between 3 (best prognosis) to 45 (worst prognosis). Advantages: The test is quick to administer and readily available. Ash (2002) indicated the Waterlow (area under the curve (AUC) = 76% with a 68-84% confidence interval), Braden, Norton and SCIPUS-A all had similar moderate predictive power for patients with SCI. Limitations: Scoring for some scale items is poorly operationalized as noted in the example above. The weighting of items is not explained, but does make some intuitive sense as it frequently reflects weightings from other measures. The scale omits items that Salzburg et al. (1996; 1999) found to be important predictors of pressure ulcer development for people with SCI in acute and rehabilitation settings. The reliability of the scale has not been demonstrated with a SCI population, but poor inter-rater reliability has been reported in other populations (Kelly 2005). A revised version of the scale has been published but no research has been conducted regarding its psychometric properties. Interpretability: Interpreting scores is difficult given lack of detail in item descriptions. Scores of 10+ denote risk of developing a pressure ulcer, 15+ high risk and 20+ very high risk. No rationale is provided for how these numbers were determined. Acceptability: Easy to score and administrate with no patient burden. No other versions/formats or translation into other languages could be located. Feasibility: The scale takes 5-10 minutes to administer and no training is required. The original scale can be found at http://www.aelseating.com/pdfs/waterlow.pdf#search=%22Waterlow%20scale%22. The revised scale is available for free over the internet http://www.judywaterlow.co.uk/downloads/Waterlow%20Score%20Card.pdf. The Waterlow Pressure Ulcer Prevention Manual is available for 6.95 from http://www.judy-waterlow.co.uk/the-waterlowmanual.htm. Clinical Summary: The Waterlow scale is quick and easy to use screen that provides predictive information about the risk of developing a pressure sore. Validity evidence is adequate, but there has been no reliability or responsiveness testing with individuals with SCI. Although it is the most common measure used in the United Kingdom (Wellard & Lo 2000; Kelly 2005), reliability issues with the original scale in non SCI populations and lack of psychometric testing with the revised scale, suggest that other generic measures (such as the Braden) or SCI specific measures, such as the SCIPUS or SCIPUS-A should be considered for use. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling + Inter O + ++ AUC ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver; AUC=area under curve

25-41

25.2.6 Functions of the Reproductive System 25.2.6.1 Emotional Quality of the Relationship Scale (EQR) The EQR scale measures feelings of affection and intimacy, ability to solve problems within the relationship, ability to communicate about sex with the partner and satisfaction with these areas and the relationship as a whole (Kreuter et al. 1994a). The 7 item EQR covers these topics as follows: affection and problem-solving (1 item each), communication (2 items) and satisfaction (3 items). Responses are scored on a four-point ordinal scale ranging from 4 (very great) to 1 (very poor) (Kreuter et al. 1996). Procedure: The EQR is a self-report instrument. Scores are summed resulting in a composite score that ranges from a maximum value of 28 to a minimum of 7. A higher score indicates that the emotional quality of the relationship is stronger. Advantages: The EQR is useful in looking at aspects of relationships experienced by individuals with spinal cord injuries. No other similar measures of these characteristics exist. Limitations: There is insufficient information provided that adequately describes the EQR. This tool has only been utilized in 3 studies referenced (Kreuter et al. 1994a; 1994b; 1996), but it was only one of a battery of questionnaires and was not used on its own. The lack of responsiveness limits the utility of the scale to measure changes after intervention. Interpretability: A greater summary score demonstrates better emotional quality of a relationship. There are no definitions and classifications of the results provided. Kreuter et al. (1994a; 1994b; 1996) reported mean values for SCI patients ranging from 21.65.0 to 23.93.9. Acceptability: The EQR questions are easily understood and the time participants take to complete the questionnaire is minimal. Kreuter et al. (1994a) found 33% and Kreuter et al. (1994b) found 40% of the subjects thought the questions talking about sex difficult to answer. It is currently only available in English. Feasibility: Staff burden is limited given the self-report nature of the scale and the estimated time for completion is 2-5minutes. No special equipment or training is required, however, the items may illicit an emotional response in the subject that requires professional attention. Copies of the tool can be obtained from the article referenced (Kreuter et al. 1996). Clinical Summary: Further investigation of tool is required before useful recommendations can be made. The tool could feasibly be used with both individuals with tetraplegia and paraplegia. Due to the lack of current literature using this tool, other more mainstream methods such as client interview should be used in conjunction with this scale. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ +++ Construct ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency

25-42

25.2.6 Functions of the Reproductive System 25.2.6.2 Knowledge, Comfort, Approach and Attitude towards Sexuality Scale (KCAASS) The 45 item Knowledge, Comfort, Approach and Attitude towards Sexuality Scale was developed to assess the training needs and professional skills of staff working in sexuality rehabilitation with spinal cord injury patients (Kendall et al. 2003). Four subscales are found within the questionnaire: knowledge (14 items), comfort (21 items), approach (5 items), and attitudes (5 items). A four-point Likert scale is used for all subscales, where 1=no knowledge/no discomfort/strongly disagree (for both approach and attitudes subscales) and 4=excellent knowledge/high discomfort/strongly agree (for both approach and attitudes subscales). Procedure: The KCAASS is administered by interview. Summary scores for each of the four aspects of sexuality are calculated (knowledge (/56); comfort (/104); approach (/20); attitude (/20)) with higher scores representing greater knowledge and skills. The subscales comfort, approach and attitude are reverse scored (Kendall et al. 2003). A maximum composite score of 200 is obtained by summing up the subscales. Advantages: The KCAASS is an SCI specific tool that identifies the individual training needs of staff working in sexual rehabilitation and aids in the development of educational programs. Principal components factor analysis confirmed the presence of 5 individual factors (knowledge, comfort, attitudes, approach and appropriateness), which accounted for 66% of the overall variance. The alpha coefficients for the subscales are all high (>.80) suggesting the items are internally consistent. Fronek et al. (2005) evaluated the change in each subscale using treatment and control groups, and discovered significant improvement across all subscales demonstrating the effectiveness of such a program. The scale was developed specifically for use within the spinal cord population. Limitations: There was weak item-total correlation between the composite score and attitude and the approach subscales illustrating these subscales should be considered separately. This is not a concern as the utility of having a composite score for developing an educational program is questionable. Interpretability: Scores for each scale provide an assessment of where education time should be allocated when creating a sexual education program. There are no classifications for the results as the purpose of the scale is to assess where the greatest need for education lies. Mean values for comparison are available in the Kendall et al. (2003) and Fronek et al. (2005) articles in case comparisons with other users need to be made. Acceptability: The scale items were developed based on literature review and are SCI specific. The scale appears to be comprehensive in nature. The tool is available in English and Dutch. Feasibility: The KCAASS is easy to administer and score. Approximately 10-15 minutes is required to complete the scale although interviewing different learners may be time-consuming and may not assist in course development for a group. If the KCAASS is self-administered then staff burden and timing issues are reduced. Copies of the questionnaire can be accessed by obtaining the paper by Kendall et al. 2003. Clinical Summary: The KCAASS addresses a broad range of potential topics which helps identify specific areas that should be focused on when developing sexual education programs for staff working within the spinal cord population. Information elicited from this tool could enhance the quality and comfort of sexual education for both the staff and client. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Content ++ ++ + N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency

25-43

25.2.6 Functions of the Reproductive System 25.2.6.3 Sexual Attitude and Information Questionnaire The SAIQ was developed to evaluate the impact of counseling programs and sexual education for persons with SCI and their partners (Brockway et al. 1978). The original SAIQ (number of items not stated) consists of four scales while the revised 39-item SAIQ includes more items within each scale and a single rating of overall concern for ones ability to have a satisfactory sexual relationship. The revisions to the original SAIQ were made to enhance reliability and validity (Brockway & Steger 1980). The SAIQ-revised is broken down as follows: scale I, sexual information (18 multiple-choice questions), scale II, sexual behavior acceptability (6 items), scale III, sexual concerns (8 items), and scale IV, non-sexual concerns (6 items). Scales II and III and the overall rating of sexual concern are scored using a 6-point Likert-scale (from 1= totally disagree/extremely concerned to 6=totally agree/not concerned) and scale IV also uses a 6-point scale, but scores are inversed (1=not concerned to 6=extremely concerned). Procedure: SAIQ is a self-report questionnaire. The subscales are scored independently of one another. Scale I is scored according to the number of items answered correctly. The scale scores for scales II, III and IV are found by summing ratings across items. Advantages: SAIQ considers not only sexual behavior but also sexual and non-sexual concerns, illustrating a more client-centered questionnaire. A lack of change in ratings for nonsexual functioning demonstrates that sexual education and counseling programs are specific in emphasizing change of attitude towards sexuality and not other non-sexual concerns (Brockway et al. 1978). Limitations: Responsiveness data may be questionable, as control groups were not used and learning effects may be responsible for the changes seen (Brockway et al. 1978). The questionnaire may require up-dating, as there has been a considerable increase in public awareness and understanding of issues such as erectile dysfunction since its publication in 1980. Interpretability: Each subscale presents separate information: higher scores for scale I suggest individuals are knowledgeable about physiological aspects of sexual functioning, higher scores on scale II represents acceptance of sexual behaviors, higher scores on scale III indicates little concern about sexual functioning, and higher scores on scale IV suggests considerable concern about non-sexual functioning (Brockway & Steger 1980). Acceptability: The SAIQ is easy to complete and the phasing is clear and not misleading; however, the content may be culturally sensitive. Some sex specific issues are considered (e.g. issues related to the menstrual cycle). The SAIQ is currently only available in English. Feasibility: Administration and scoring of the tool takes 10-15 minutes. No special equipment is required. If used as part of a counseling or training program then staff training is required. Contact the author at brockja@u.washington.edu to obtain a copy of the scale. Clinical Summary: The SAIQ may prove to be a useful tool to evaluate the effectiveness of sexual counseling and education programs designed for individuals with tetraplegia and/or paraplegia. Also, the tool may be useful for identifying individuals who would benefit from such a program. Psychometric Summary
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling IC +++ ++ Construct + ++ + N/A TR +++ Concurrent ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency Rigor +++

25-44

25.2.6 Functions of the Reproductive System 25.2.6.4 Sexual Behaviour Scale (SB) The SB scale measures the sexual expressions used by couples. There are seven items that cover touching, kissing, manual and oral stimulation of genital and other erogenous zones, and sexual intercourse (Kreuter et al. 1996). Procedure: The SB is a self-report instrument. Items are summed resulting in a composite score that ranges from a maximum value of 49 to a minimum value of 7. Advantages: There is high internal consistency (alpha=.96) suggesting the stability of the items is good and the high factor loadings of the items using principle components suggest the scale is measuring a single dimension (behaviour). Limitations: There is no description of the response categories used with this scale. The scale has only been used as part of a larger battery of questionnaires and not on its own. Additional study of the psychometrics such as test-retest reliability is required. Interpretability: There are no definitions or classifications, important cut point or norms provided to assist with interpreting the scores. No descriptions of scores are given, other than the higher the score the better. Acceptability: The time taken to complete the SB is less than 5 minutes. Feasibility: Staff burden is minimal. No special equipment or training is required. Contact the author at margareta.kreuter@fhs.gu.se to obtain a copy of the scale. Clinical Summary: The SB allows a couple to gain insight into the type and degree of sexual expression they experience together. The information obtained from this tool might be useful in assisting couples with issues related to sexual intimacy. There is limited information found on the SB and further study is required before recommending this tool for clinical use. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC ++ ++ FA ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; FA=factor analysis

25-45

25.2.6 Functions of the Reproductive System 25.2.6.5 Sexual Interest, Activity and Satisfaction (SIAS) / Sexual Activity and Satisfaction (SAS) Scales The SAIS (Kreuter et al. 1994a; 1994b) and SAS (Kreuter et al. 1996) are tools used to investigate the sexual activity and satisfaction of individuals with SCI. The SAIS consists of 6 items covering the following areas: sexual desire (1 item; scale from 1, very often, to 4, never), sexual activity (1 item; scale from 1, never, to 8, every other day), and sexual satisfaction (4 items; differing scales from a 3-point to 5-point response; see tool). Based on research by the developers (Kreuter et al. 1994; 1996), the 3-item SAS was created by removing the sexual desire item and two sexual satisfaction items from the SAIS, thus leaving the sexual activity item (same scale as above) and two sexual satisfaction items (scale from 1, not at all, to 4, very much). Procedure: The SAIS and SAS are self-report questionnaires. The response items can be summed without weights or standardization. The composite score ranges from 28 to 6 for SAIS and 16 to 3 for SAS. A higher score indicates greater sexual activity and satisfaction. Advantages: This tool is one of the better researched measures within the area of sexual interest and satisfaction. There is strong psychometric support for the scales with alpha values between .8 and .9. Validity is supported by principle components analysis which demonstrates strong uni-dimensionality (the scale consists of a single dimension) with both SCI and general population samples. Support for construct validity exists based on hypothesis testing. Limitations: Detailed explanation of the purpose of the scale modification is not provided in the literature. Independent replication of the psychometrics and additional studies of test-retest reliability and responsiveness is require if the scale is to be used for evaluating the effect of interventions. Interpretability: There are no consistent definitions or classifications for the results detailed within the paper that developed SAS (Kreuter et al. 1996). For mean values for normative comparisons consult Kreuter et al. (1994a; 1994b) for the SAIS and Kreuter et al. (1996) for the SAS. Acceptability: These scales take between 1-2 minutes to complete. The items may contain content that is culturally sensitive. These tools are only available in English. The tool may be administered in interview format if required. Feasibility: There is relatively no staff burden due to the short length of this measure. No special training is required to score or administer the SAS. The articles referenced contain the tools (Kreuter et al. 1994;1996). Clinical Summary: Both of these tools may be clinically useful to assist in understanding, describing and quantifying the sexual activity and satisfaction of individuals with SCI (both tetra and paraplegia). The tools may provide a platform from which to explore issues of sexuality. Upon further study, the tool may also be effective in evaluating the effectiveness of sex specific interventions. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ IC +++ +++ Construct ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-46

25.2.6 Functions of the Reproductive System 25.2.6.6 Sexual Interest and Satisfaction Scale (SIS) The 7-item SIS scale measures sexual adjustment after SCI. The tool was designed to assess different aspects of sexuality before and after injury. Four items determine the impact SCI had on sexuality and sexual function using a 4-point response scale (increased=3, unchanged=2, decreased=1, and absent=0). The remaining 3 questions assess general satisfaction before and after injury, using a modified visual analogue scale with 7 marked intervals and end point descriptors of very dissatisfied (1) to very satisfied (7) (Siosteen et al. 1990). Procedure: The SIS is self-administered then checked by personal interview. The scores for the 3 satisfaction items are rescaled to a range of 0 to 3 in order to enable calculation of a composite score. The composite score is a sum of 6 items (satisfaction pre-injury is not used) and has a maximum value of 18 and a minimum value of 0. Advantages: The SIS was developed for use in the spinal cord population. It provides a quick review of the individuals sexual experiences, while factoring in their pre-injury state. The internal consistency (alpha=.96) is extremely high and the factor analysis indicates this tool represents a single dimension, despite the tool name. Furthermore, it has strong construct validity, for example, frequency of sexual intercourse predicts 56% of the variance in the SIS. Limitations: The type of spinal cord injury needs to be taken into consideration when interpreting the results. Sexual adjustment for those with incomplete injuries may differ considerably when compared to complete injuries. Lack of depth and breadth of the SIS items may limit the usefulness to clinicians. Furthermore, description of the SIS is inconsistent within the literature. Independent assessment of the reliability and validity and investigation of the testretest reliability and responsiveness of the tool is warranted. Interpretability: Achieving a high score on the SIS illustrates greater sexual adjustment while a lower scorer demonstrates poor sexual adjustments after spinal cord injury. There are no known cut points or norms to assist with interpretation. Acceptability: Patient burden in completing the SIS is minimal due to the small number of questions. Items should be acceptable to both males and females. Question items may seem personal and embarrassing to some. This tool is available only in English. Feasibility: Administration and scoring requires approximately 5 minutes. No special training is required to administer or score this tool and it can be found in Siosteen et al. (1990). Clinical Summary: Sexual satisfaction and interest is an area of serious concern for the SCI population. The SIS provides a reasonably well defined spinal cord specific measure that may be useful in eliciting information regarding a sensitive area. Although it has not been widely used and psychometric properties have been reported by only one study, it is one of few sexuality scales that have been used within the SCI population. When comparing pre and post injury results in those with tetraplegia, one must consider the time since injury, as this variable affects sexual function and satisfaction. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Content ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency

25-47

25.2.7 Functions - General 25.2.7.1 Spinal Cord Injury Secondary Conditions Scale (SCI-SCS) The Spinal Cord Injury Secondary Conditions Scale (SCI-SCS) is a 16-item scale based on the Seekins Secondary Conditions Questionnaire (SCQ). The SCQ was originally developed to assess secondary conditions associated with chronic disability and their impact on multiple life domains but its broadness limits its usefulness for studies targeting specific conditions (Kalpakjian et al. 2007). Thus, items for the SCI-SCS were selected from the SCQ to specifically target secondary conditions associated with SCI that directly and indirectly impact health and physical functioning. Sixteen items were selected from the original 40 item scale, representing problems in the areas of skin, musculoskeletal, pain, bowel/bladder, and cardio-vascular. Procedure: The instrument is a self-report questionnaire. The rating scale uses a 4-point ordinal scale ranging from 0 (not experienced/insignificant problem never limiting activity) to 3 (significant/chronic problem). Advantages: Preliminary assessment of the reliability and validity of the SCI-SCS suggests a promising scale for use with larger and diverse SCI samples (Kalpakjian et al. 2007). Limitations: Rephrasing of item descriptions may be considered for particular items, such as sexual dysfunction, which may reflect dissatisfaction rather than dysfunction. Only one study has assessed the psychometric properties of the SCI-SCS among the SCI population. Because retrospective data were used in the study, items could not be reworded before data collection took place therefore clarity of some of the items is questionable (Kalpakjian et al. 2007). Further examination of the scales construct validity using, for example, correspondence between clinical examination and response to the scale items would be worthwhile to pursue in future studies. Interpretability: Total scores range from 0 to 48 and are derived from the sum of the problem ratings. Higher scores indicate greater overall problems with secondary conditions. No meaningful cut points or responsiveness data exists at this time. Acceptability: Items for the SCI-SCS were selected specifically for population with SCI. The selection was based on 3 criteria: that they represent conditions that are physiologic in nature (vs. psychological or environmental); that they are measurable by patient history and physical examination, reported episodes, validated scales, or medical tests or interventions; and those that can be either prevented or managed with medical intervention and/or health behaviors. Feasibility: A copy of the tool is available in the paper by Kalpakjian (2007). Clinical Summary: The SCI-SCS is not designed to objectively evaluate secondary conditions in SCI, but rather the subjective experience of these problems for use in research to allow for cross-sample comparison and examination of the association of secondary conditions and various aspects of health and psychosocial well being in people with SCI (Kalpakjian et al. 2007). This tool has some potential clinical application as a screen for secondary conditions upon follow up over the phone to determine if clients would benefit from additional intervention. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Construct ++ N/A N/A N/A TR ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-48

Body Function / Structure References Abruzzese RS. Early assessment and prevention of pressure sores. In: Lee BY (ed). Chronic Ulcers of the Skin. McGraw Hill: New York, 1985, pp 1 -19 Agency for Health Care Policy and Research (AHCPR). Panel on the prediction and prevention of pressure ulcers in adults. Pressure Ulcers in Adults: Prediction and Prevention. In Clinical Practice Guideline No. 3. AHCPR Publication No. 92-0047. Rockville MD: AHCPR; 1992. Anton HA, Miller WC, Townson AF. Measuring fatigue in persons with spinal cord injury. Arch Phys Med Rehabil 2008; 89: 538-542. American Spinal Injury Association: International Standards for Neurological Classification of Spinal Cord Injury, revised 2002. 2002. Chicago, IL, American Spinal Injury Association. Ash D. An exploration of the occurrence of pressure ulcers in a British spinal injuries unit. J Clin Nurs 2002;11:470-478. Ashworth B. Preliminary trial of carisoprodol in multiple sclerosis. Practitioner 1964;192:540542. Ayalon A, Inbar O, Bar-Or O. Relationships among measurements of explosive strength and anaerobic power. In: Nelson RC, Morehouse CA. (ed). International Series on Sport Science 1: Biomechanics IV. University park press, Baltimore, MD, 1974, p 527-532. Aydin G, Tomruk S, Keles I, Demir SO, Orkun S. Transcutaneous electrical nerve stimulation versus baclofen in spasticity: clinical and electrophysiologic comparison. Am J Phys Med Rehabil 2005;84:584-592. Bar-Or O, Inbar O, Dotan R. Proficiency, speed and endurance test for the wheelchair-bound. In: Simri U. (ed). Motor Learning in Physical Education and Sports. Wingate Institute, Natanya, Israel,1976: p 310-318. Bar-Or O, Dotan R, Inbar O. A 30 second all out ergometric test its reliability and validity for anaerobic capacity. Israeli J Med Sci 1977;13:326. Bar-Or, Inbar O. Relationships among anaerobic capacity, sprint and middle distance running of school children. In: Shephard RJ, Lavelle H. (ed). Physical Fitness Assessment. Charles C Thomas, Springfield, IL,1978: p 142-147. Basta SM. Pressure Sore Prevention Self-Efficacy and Outcome Expectations: A Study of People with Spinal Cord Injury. Rehabilitation Nursing Research 1994: 11-17. Beck AT, Ward CH, Mendelsohn M, Mock J, Erbaugh J. An inventory for measuring depression. Archives of General Psychiatry 1961; 4: 561-571. Benz EN, Hornby TG, Bode RK, Scheidt RA, Schmit BD. A physiologically based clinical measure for spastic reflexes in spinal cord injury. Arch Phys Med Rehabil 2005;86:52-59. Bergstrom N, Braden BJ, Laguzza A, Holman V. The Braden Scale for Predicting Pressure Sore Risk. Nurs Res 1987;36:205-210. Bernadt MW, Mumford J, Taylor C, Smith B, Murray RM. Comparison of questionnaire and laboratory tests in the detection of excessive drinking and alcoholism. Lancet 1982;1:325 328. Blaustein DM, Zafonte R, Thomas D, Herbison GJ, Ditunno JF. Predicting recovery of motor complete quadriplegic patients. 24 hour v 72 hour motor index scores. Am J Phys Med Rehabil 1993;72:306-311. Bombardier CH, Richards JS, Krause J, Tulsky D, Tate D. Symptoms of Major Depression in People With Spinal Cord Injury: Implications for Screening. Arch Phys Med Rehabil 2004;85:1749-1756. Booth S, Kendall M, Fronek P, Miller D, Geraght T. Training the interdisciplinary team in sexuality rehabilitation following spinal cord injury: A needs assessment. Sex Disabil 2003;21:249-261. Boviatsis EJ, Kouyialis AT, Korfias S, Sakas DE. Functional outcome of intrathecal baclofen administration for severe spasticity. Clin Neurol Neurosurg 2005;107:289-295. 25-49

Bohannon RW, Smith MB. Interrater reliability of a modified Ashworth scale of muscle spasticity. Phys Ther 1987;67:206-207. Brockway JA, Steger JC. Sexual attitude and information questionnaire: Reliability and validity in a spinal cord injured population. Sex Disabil 1981;4:49-60. Brockway JA, Steger JC, Berni R, Ost V, Williamson-Kirkland TE, Peck CL. Effectiveness of a sex education and counseling program for spinal cord injured patients. Sex Disabil 1978;1:127-136. Buckelew SP, Burk JP, Brownelee-Duffeck M, Frank RG, DeGood D. Cognitive and somatic aspects of depression among a rehabilitation sample: Reliability and Validity of SCL-90-R research subscales. Rehabilitation Psychology 1988; 33: 67-75. Calancie B, Molano MR, Broton JG, Bean JA, Alexeeva N. Relationship between EMG and muscle force after spinal cord injury. J Spinal Cord Med 2001;24:19-25. Cardenas D, Turner J, Warms C, Marshall H. Classification of chronic pain associated with spinal cord injuries. Arch Phys Med Rehabil 2002;83:1708-1714. Chung MC, Preveza E, Papandreou K, Prevezas N. Spinal cord injury, posttraumatic stress, and locus of control among the elderly: a comparison with young and middle-aged patients. Psychiatry 2006; 69: 69-80. Cohen ME, Ditunno JF, Jr., Donovan WH, Maynard FM, Jr. A test of the 1992 International Standards for Neurological and Functional Classification of Spinal Cord Injury. Spinal Cord 1998;36:554-560. Cohen ME, Sheehan TP, Herbison GJ. Content validity and reliability of the International Standards for Neurological Classification of Spinal Cord Injury. Top Spinal Cord Inj Rehabil 1996;1:15-31. Curtis KA, Roach KE, Applegate EB, Amar T, Benbow CS, Genecco TD, Gualano J. Development of the Wheelchair User's Shoulder Pain Index (WUSPI). Paraplegia 1995;33:290-293. Curtis KA, Roach KE, Applegate EB, Amar T, Benbow CS, Genecco TD, Gualano J. Reliability and validity of the Wheelchair User's Shoulder Pain Index (WUSPI). Paraplegia 1995;33:595-601. Curtis KA, Drysdale GA, Lanza RD, Kolber M, Vitolo RS, West R. Shoulder pain in wheelchair users with tetraplegia and paraplegia. Arch Phys Med Rehabil 1999;80:453-457. Dahl TH. International classification of functioning, disability and health: An introduction and discussion of its potential impact on rehabilitation services and research. J Rehabil Med 2002;34:201-204. Derogatis LR, Melisaratos N. The Brief Symptom Inventory: in introductory report. Psychol Med 1983; 13(3): 595-605. Derogatis FR. The Brief Symptom Inventory. Clinical Psychometric Research 1975: Baltimore. Donovan W, Dimitrijevic M, Dahm L, Dimitrijevic M. Neurophysiological approaches to chronic pain following spinal cord injury. Paraplegia 1982;20:135-146. Ewing JA. Detecting Alcoholism: The CAGE Questionnaire. JAMA 1984; 252:1905-1907. Frank R, Elliot T. Life stress and psychologic adjustment following spinal cord injury. American Journal of Physical Medicine & Rehabilitation 1987; 68: 344-347. Frankel HL, Hancock DO, Hyslop G, Melzak J, Michaelis LS, Ungar GH, Vernon JD, Walsh JJ. The value of postural reduction in the initial management of closed injuries of the spine with paraplegia and tetraplegia. Paraplegia 1969;7:179-192. Fronek P, Booth S, Kendall M, Miller D, Geraght T. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sex Disabil 2005;23:51-63. Gianino JM, York MM, Paice JA, Shott S. Quality of life: effect of reduced spasticity from intrathecal baclofen. J Neurosci Nurs 1998;30:47-54. 25-50

Goldberg DP, Hillier VF. A Scaled Version of the General Health Questionnaire. Psychol Med 1979; 9: 139-145 Gosnell DJ. An assessment tool to identify pressure sores. Nurs Res 1973;22:55-59. Graves DE, Frankiewicz RG, Donovan WH. Construct validity and dimensional structure of the ASIA motor scale. J Spinal Cord Med 2006;29:39-45. Griffiths TC, Myers DH, Talbot AW. A study of the validity of the scaled version of the General Health Questionnaire in paralyzed spinally injured out-patients 1993; 23: 497-504. Haas BM, Bergstrom E, Jamous A, Bennie A. The inter rater reliability of the original and of the modified Ashworth scale for the assessment of spasticity in patients with spinal cord injury. Spinal Cord 1996;34:560-564. Hammell KW , Miller WC, Forwell SJ, Forman BE, Jacobsen BA. Fatigue and spinal cord injury: a qualitative analysis Spinal Cord 2008; advance online publication 10 June 2008. Hardt J, Gerbershagen HU, Franke P. the symptom check-list, SCL-(90)-R: its use and characteristics in chronic pain patients. European Journal of Pain 2000; 4: 137-148. Hawley JA, Williams MM, Vickovic MM, Handcock PJ. Muscle power predicts freestyle swimming performance. Br J Sports Med 1992;26:151-155. Hayes KC, Wolfe DL, Hsieh JT, Potter PJ, Krassioukov A, Durham CE. Clinical and electrophysiologic correlates of quantitative sensory testing in patients with incomplete spinal cord injury. Arch Phys Med Rehabil 2002;83:1612-1619. Heinrich RK, Tate DG. Latent variable structure of the Brief Symptom Inventory in a sample of persons with spinal cord injuries. Rehab Psychol 1996; 41:131-147. Heinrich RK, Tate DG, Buckelew SP. Brief Symptom Inventory norms for spinal cord injury. Rehabil Psychol 1994; 39(1): 49-56. Hol AT, Eng JJ, Miller WC, Sproule S, Krassioukov AV. Reliability and Validity of the Six-Minute Arm Test for the Evaluation of Cardiovascular Fitness in People With Spinal Cord Injury. Arch Phys Med Rehabil 2007; 88:489-95. Jacobs P, Mahoney E, Johnson B. Reliability of wingate anaerobic testing in persons with complete paraplegia. J Spinal Cord Med 2003;26:141-144. Jacobs PL, Johnson B, Somarriba GA, Carter AB. Reliability of upper extremity anaerobic power assessment in persons with tetraplegia. J Spinal Cord Med 2005;28:109-113. Jonsson M, Tollback A, Gonzales H, Borg J. Inter-rater reliability of the 1992 international standards for neurological and functional classification of incomplete spinal cord injury. Spinal Cord 2000;38:675-679. Kalpakjian CZ, Scelza WM, Forchheimer MB, Toussaint LL. Preliminary Reliability and Validity of a Spinal Cord Injury Secondary Conditions Scale. The Journal of Spinal Cord Medicine 2007; 30: 131-39. Kelly J. Inter-rater reliability and Waterlows pressure ulcer risk assessment tool. Nursing Standard 2005;19:86-87,90-92. Kendall M, Booth S, Fronek P, Miller D, Geraghty T. The development of a scale to assess the training needs of professionals in providing sexuality rehabilitation following spinal cord injury. Sex Disabil 2003;21:49-64. Kersten P, Mullee MA, Smith JAE, McLellan L, George S. Generic health status measures are unsuitable for measuring health status in severely disabled people. Clinical Rehabilitation 1999; 13: 219-228. Krassioukov A, Wolfe DL, Hsieh JT, Hayes KC, Durham CE. Quantitative sensory testing in patients with incomplete spinal cord injury. Arch Phys Med Rehabil 1999;80:1258-1263. Kreuter M, Sullivan M, Siosteen A. Sexual adjustment and quality of relationships in spinal paraplegia: A controlled study. Arch Phys Med Rehabil 1996;77:541-548. Kreuter M, Sullivan M, Siosteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia 1994; 32:225-235. 25-51

Kreuter M, Sullivan M, Siosteen A. Sexual adjustment after spinal cord injury (SCI) -comparison of partner experiences in pre- and postinjury relationships. Paraplegia 1994;32:759-770. Krupp LB, LaRocca NG, Muir-Nash J, Steinbery AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus Arch Neurol. 1989; 46: 1121-3. Kuptniratsaikul V, Chulakadabba S, Ratanavijitrasil S. An instrument for Assessment of Depression among Spinal Cord Injury Patients: Comparison between the CES-D and the TDI. J Med Assoc Thai 2002; 85:978-982 LaChapelle D, Alfano D. Revised neurobehavioral scales of the MMPI: Sensitivity and specificity in traumatic brain injury. Appl Neuropsychol 2005;12:143-150. Lazar RB, Yarkony GM, Ortolano D, Heinemann AW, Perlow E, Lovell L, Meyer PR. Prediction of functional outcome by motor capability after spinal cord injury. Arch Phys Med Rehabil 1989;70:819-822. Lechner HE, Frotzler A, Eser P. Relationship between self- and clinically rated spasticity in spinal cord injury. Arch Phys Med Rehabil 2006;87:15-19. Lim HK, Lee DC, McKay WB, Priebe MM, Holmes SA, Sherwood AM. Neurophysiological assessment of lower-limb voluntary control in incomplete spinal cord injury. Spinal Cord 2005;43:283-290. Lim HK, Sherwood AM. Reliability of surface electromyographic measurements from subjects with spinal cord injury during voluntary motor tasks. Journal of Rehabilitation Research & Development 2005;42:413-421. Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the beck depression and anxiety inventories. Behav Res Ther 1995a; 33: 335342. Lovibond SH, Lovibond PF. Manual for the Depression Anxiety Stress Scales, 2nd edn. Psychology Foundation of Australia: Sydney, 1995b. Lykouras L, Adrachta D, Kalfakis N, Oulis P, Voulgari A, Christodoulou GN, Papageorgiou C, Stefanis C. GHQ-28 as an aid to detect mental disorders in neurological inpatients 1996; 93: 212-216. Marino RJ, Graves DE. Metric properties of the ASIA motor score: subscales improve correlation with functional activities. Arch Phys Med Rehabil 2004;85:1804-1810. Measurement Excellence and Training Resources Information Center. Critical Review of CAGE Questionnaire. Available fromURL: http://www.measurementexperts.org//instrument/instrument _reviews.asp?detail=46 Metcalfe M, Goldman E. Validation of an inventory for measuring depression 1965; 111: 240242. Miller WC, Anton HA, Townson AF. Measurement properties of the CESD scale among individuals with spinal cord injury. Spinal Cord 2008; 46: 287-292. Mitchell MC, Burns NR, Dorstyn DS. Screening for depression and anxiety in spinal cord injury with DASS-21. Spinal Cord 2007; 1-5. Morlan KK, Tan SY. Comparison of the Brief Psychiatric Rating Scale and the Brief Symptom Inventory. Journal of Clinical Psychology 1998; 54(7): 885-894. Norton D, McLaren R, Exton-Smith AN. An Investigation of Geriatric Nursing Problems in Hospitals. London: National Corporation for the Care of Old People;1962. Noth J. Trends in the pathophysiology and pharmacotherapy of spasticity. J Neurol 1991;238:131-139. Overholser JC, Schubert DSP, Foliart R, Frost F. Assessment of emotional distress following a spinal cord injury. Rehabilitation Psychology 1993; 38: 187-198. Pedley GE. Comparison of pressure ulcer grading scales: a study of clinical utility and inter-rater reliability. International Journal of Nursing Studies 2004;41:129-140. Penn RD. Intrathecal baclofen for severe spasticity. Ann N Y Acad Sci 1988;531:157-166. 25-52

Page AC, Hooke GR, Morrison DL. Psychometric properties of the Depression Anxiety Stress Scales (DASS) in depressed clinical samples. British Journal of Clinical Psychology 2007; 46: 283-297. Post MWM, Gerritsen J, Diederiks JPM, De Witte LP. Measuring health status of people who are wheelchair-dependent: validity of the Sickness Impact Profile 68 and the Nottingham Health Profile. Disability and Rehabilitation 2001; 23: 245-253. Priebe MM, Sherwood AM, Thornby JI, Kharas NF, Markowski J. Clinical assessment of spasticity in spinal cord injury: a multidimensional problem. Arch Phys Med Rehabil 1996; 77:713-716. Priebe MM, Waring WP. The interobserver reliability of the revised American Spinal Injury Association standards for neurological classification of spinal injury patients. Am J Phys Med Rehabil 1991;70:268-270. Pullman SL, Goodin DS, Marquinez AI, Tabbal S, Rubin M. Clinical utility of surface EMG: report of the therapeutics and technology assessment subcommittee of the American Academy of Neurology. Neurology 2000;55:171-177. Putzke JD, Richards JS, Ness T, Kezar L. Test-retest reliability of the Donovan spinal cord injury pain classification scheme. Spinal Cord 2003;41:239-241. Putzke JD, Richards JS, Ness T, Kezar L. Interrater reliability of the International Association for the Study of Pain and Tunks' spinal cord injury pain classification schemes. Am J Phys Med Rehabil 2003;82:437-440. Radloff LS. CES-D scale: A self report depression scale for research in the general populations. Applied Psychological Measurement 1977;1:385-401. Radloff LS. The Use of the Center for Epidemiological Studies of Depression Scale in Adolescents and Young Adults. J Youth Adoles 1991;20:149-166. Radnitz CL, McGrath RE, Tirch DD, Willard J, Perez-Strumolo L, Festa J, Binks M, Broderick CP, Schlein IS, Walczak S, Lillian LB. Use of the Beck Depression Inventory in Veterans with Spinal Cord Injury. Rehabilitation Psychology 1997; 42(2): 93-101. Richards JS, Hicken BL, Putzke JD, Ness T, Kezar L. Reliability characteristics of the Donovan spinal cord injury pain classification system. Arch Phys Med Rehabil 2002;83:1290-1294.
Rush JA, First MB, Blacker D. Handbook of Psychiatric Measures. American Psychiatric Pub. 2008.

Salkind MR. Beck depression inventory in general practice J R Coll Gen Pract 1969; 18: 267271. Salzberg CA, Byrne DW, Kabir R, van Niewerburg P, Cayten CG. Predicting pressure ulcers during initial hospitalization for acute spinal cord injury. Wounds 1999;11:45-57. Salzberg C A, Byrne DW, Cayten CG, van Niewerburgh P, Murphy JG, Viehbeck M. A new pressure ulcer risk assessment scale for individuals with spinal cord injury. Am J Phys Med Rehabil 1996;75:96-104. Sawatzky BJ, Slobogean GP, Reilly CW, Chambers CT, Hol AT. Prevalence of shoulder pain in adult- versus childhood-onset wheelchair users: a pilot study. J Rehabil Res Dev 2005;42:18. Schurle Bruce A, Arnett PA. Longitudinal study of the Symptom Checklist 90-Revised in Multiple Sclerosis patients. The Clinical Neuropsychologist 2006; 22:46-59. Siosteen A, Lundqvist C, Blomstrand C, Sullivan L, Sullivan M. Sexual ability, activity, attitudes and satisfaction as part of adjustment in spinal cord-injured subjects. Paraplegia 1990;8:285-295. Skold C. Spasticity in spinal cord injury: self- and clinically rated intrinsic fluctuations and intervention-induced changes. Arch Phys Med Rehabil 2000;81:144-149. Snaith RP. The Hospital Anxiety And Depression Scale. Health and Quality of Life Outcomes 2003; 1: 29.

25-53

Spitzer RL, Kroenke K, Williams J. Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Primary Care Evaluation of Mental Disorders. Patient Health Questionnaire. JAMA 1999;282:1737-1744. Tate D. Alcohol Use Among Spinal Cord Injured Patients. Am J Phys Med Rehabil 1993;72:175183. Tate DG, Forcheimer M, Maynard F, Davidoff G, Dijkers M. Comparing Two Measures of Depression in Spinal Cord Injury. Rehabil Psychol 1993;38:53-61. Tederko P, Krasuski M, Czech J, Dargiel A, Garwacka-Jodzis I, Wojciechowska A. Reliability of clinical spasticity measurements in patients with cervical spinal cord injury. Ortop Traumatol Rehabil 2007; 9: 467-483. Tunks E. Pain in spinal cord injured patients. In: Bloch R, Basbaum M (ed). Management of Spinal Cord Injuries. Williams and Wilkins, Baltimore, MD, 1986: p 180-211. Waterlow JJ. Pressure sores: a risk assessment card. Nurs Times1985;81:49-55. Wineman NM, Durand EJ, Steiner RP. A Comparative Analysis of Coping Behaviors in Persons with Multiple Sclerosis or a Spinal Cord Injury. Research in Nursing & Health 1994; 17: 185194. Wellard S, Lo SK. Comparing Norton, Braden and Waterlow risk assessment scales for pressure ulcers in spinal cord injuries. Contemp Nurse 2000;9:155-160. Woolrich RA, Kennedy P, Tasiemski T. A preliminary psychometric evaluation of the Hospital Anxiety and Depression Scale (HADS) in 963 people living with a spinal cord injury. Psychol Health Med 2006; 11: 8090. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression scale. Acta Psychiatr Scand 1983; 67: 361370 Zigmond AS, Snaith RP. The HADS: Hospital Anxiety and Depression Scale. Windsor 1994: NFER Nelson. Zung WWK. A self-rating depression scale. Arch Gen Psychiatry 1965;12:63-70.

25-54

25.3 Activity Activity as defined for use in the International Classification of Function, Health and Disability (WHO 2001) is the execution of a task or action. As such activity can be considered to occur at a person level rather than a systems level such as body function. A debate exists regarding the segregation of activity and participation as separate components or in our case classifications and even the (WHO 2001) acknowledges this difficulty and therefore presents the domains as a single list. Recently Jette et al. (2003) tested the hypothesis that activity and participation were distinct dimensions within physical function. They concluded that distinct concepts were indeed identifiable for mobility and daily activities and social/participation. As such we present tools mobility and self care (daily) activity tools in the following section. The reader is reminded that several tools cross not only domains (mobility, daily activity) but also components (activity, participation). In this case we have classified the tool in the area most clearly represented by measure. For example in a self report questionnaire this would be reflected by the area with the most questions (items). The outcome measures reviewed under this category include. 25.3.1 Mobility .....................................................................................................................25-57 25.3.1.1 4 Functional Tests for Persons who Self-Propel a Manual Wheelchair (4FTPSMW) .............................................................................................................25-57 25.3.1.2 6-Minute Walk Test (6MWT) ..................................................................................25-58 25.3.1.3 10 Meter Walking Test (10 MWT)...........................................................................25-59 25.3.1.4 Clinical Outcome Variables Scale (COVS) .............................................................25-60 25.3.1.5 Capabilities of Upper Extremity Instrument (CUE)..................................................25-61 25.3.1.6 Functional Standing Test (FST)..............................................................................25-62 25.3.1.7 The Grasp and Release Test (GRT) ......................................................................25-63 25.3.1.8 Hand-Held Myometer .............................................................................................25-64 25.3.1.9 Jebsen Hand Function Test ...................................................................................25-65 25.3.1.10 Modified Functional Reach Test (mFRT) ..............................................................25-66 25.3.1.11 Rivermead Mobility Index (RMI) ...........................................................................25-67 25.3.1.12 Sollerman Hand Function Test .............................................................................25-68 25.3.1.13 Tool for assessing mobility in wheelchair-dependent paraplegics.........................25-69 25.3.1.14 Tetraplegia Hand Activity Questionnaire (THAQ) .................................................25-70 25.3.1.15 Timed Motor Test (TMT) ......................................................................................25-71 25.3.1.16 Timed Up and Go Test (TUG ...............................................................................25-72 25.3.1.17 The Van Lieshout Test Short Version (VLT-SV) ...................................................25-73 25.3.1.18 Walking Index for Spinal Cord Injury (WISCI) and WISCI II..................................25-74 25.3.1.19 Wheelchair Circuit (WC).......................................................................................25-75 25.3.1.20 Wheelchair Skills Test ..........................................................................................25-76 25.3.2 Self-Care...................................................................................................................25-77 25.3.2.1 The Barthel Index...................................................................................................25-77 25.3.2.2 Frenchay Activities Index (FAI)...............................................................................25-78 25.3.2.3 Functional Indepedence Measure (FIM).................................................................25-79 25.3.2.5 Functional Independence Measure Self-Report (FIM-SR) ......................................25-81 25.3.2.6 Klein-Bell Activities of Daily Living Scale (K-B Scale) .............................................25-82 25.3.2.7 Lawton Instrumental Activities of Daily Living scale (IADL).....................................25-83 25.3.2.8 Physical Activity Scale for Individuals with Physical Disabilities (PASIPD) .............25-84 25.3.2.9 Quadriplegia Index of Function (QIF) .....................................................................25-85 25.3.2.10 Quadriplegia Index of Function (QIF) Short Form..............................................25-86 25-55

25.3.2.11 Self Care Assessment Tool (SCAT) .....................................................................25-87 25.3.2.12 Skin Management Needs Assessment Checklist (SMNAC) .................................25-88 25.3.2.13 Spinal Cord Injury Lifestyle Scale (SCILS) ...........................................................25-89 25.3.2.14 The Spinal Cord Independence Measure (SCIM) .................................................25-90 Activity References ..............................................................................................................25-92

25-56

25.3.1 Mobility 25.3.1.1 4 Functional Tests for Persons who Self-Propel a Manual Wheelchair (4FTPSMW) The 4 Functional Tests for Persons who Self-Propel a Manual Wheelchair (4FTPSMW) was developed to assist clinicians in assessing the effect of different postural supports (e.g. back support and seat cushions) (May et al. 2003). The assessment of postural supports is important because they can influence sitting comfort, postural alignment, buttock pressure and functional abilities (May et al. 2003). Existing tests assessing wheelchair skills such as the Wheelchair Skills Test are not ideal due to the crude nature of the scoring schema (i.e. pass/fail). A test assessing sitting balance, such as the modified Functional Reach Test, are not well suited to assessing postural supports since the individual reaches forward and removes contact with their back support. The test was developed by an experienced group of physiotherapists. A literature review was conducted and input from individuals with SCI and researchers were obtained. The test includes 4 tasks: 1) timed forward wheeling; 2) ramp ascent (forward wheeling); 3) forward vertical reach distance; and 4) one-stroke push replaced ramp decline. Five minute rest breaks were provided between tasks to limit fatigue. Procedure: The tasks in the 4FTPSMW are scored as follows: 1) timed forward wheeling (seconds); 2) ramp ascent (forwards wheeling) (seconds); 3) forward vertical reach distance (cm); and 4) one-stroke push (cm). Advantages: The 4FTPSMW was conceptually well developed to be a functional test suited for the clinical setting (May et al. 2003). For example the timed forward wheeling task is based on a distance of 23 meters (plus length of the wheelbase), which is the average length of a crosswalk in a 4 lane intersection. Limitations: The 4FTPSMW is a relatively new test and has not been widely tested. To date, the test has not included female subjects and limited information was available on the types of SCI included in the initial study (i.e. no information was available on the ASIA impairment grade, level or completeness of injury). It is only relevant to individual who use a manual wheelchair (i.e. not suited to individuals who use an electric wheelchair). Interpretability: The 4FTPSMW assesses the capacity of an individual to complete functional tasks wheelchair task which will enable postural supports to be compared. The scoring system is useful since it is objective and has ratio level properties. No normative data is available. Acceptability: The tasks included in the 4FTPSMW were tolerated well by participants, only the ramp ascend task was difficult for an individual with C6 SCI at 4 months post injury. Feasibility: The 4FTPSMW is well suited to be administered in the clinical setting. The tasks have been well described which allows the test to be administered in a standardized manner. The equipment required for the test includes: 23 m corridor, 1 m measuring stick, ramp (10.3 m and 1:13 grade), carpeted surface (1.5 cm pile), and a stop watch. The test takes between 30 45 minutes to complete 2 trials of the 4 functional tasks including rest breaks (note: 2 trials were required for test re-test reliability rather than to eliminate the practice effect). Clinical Summary: The 4FTPSMW appears to be a useful test to assess postural support in individuals with SCI, however data to validate that it can discriminate between different postural supports has not been provided (May et al. 2003). Future research should compare tests such as the 4FTPSMW with the modified Functional Reach Test and the Wheelchair Skills Test to assist clinicians in determining what information is provided by each test and the test(s) needed to prescribe wheelchairs, cushions, back supports and to assess wheelchair skills. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR +++ N/A N/A N/A N/A N/A ++ Inter O +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; Inter O=interobserver

25-57

25.3.1 Mobility 25.3.1.2 6-Minute Walk Test (6MWT) The self-paced 6-minute walk test was originally developed as a measure for patients with chronic obstructive pulmonary disease. It measures the distance that a patient can walk on a flat, hard surface in 6 minutes (American Thoracic Society (ATS) 2002), and assesses the submaximal level of functional capacity. The test in its entirety evaluates the integrated response of pulmonary, cardiovascular, and circulatory systems, in addition to level of motor control, functional neuromuscular units, and muscle metabolism (Ditunno et al. 2007). Procedure: The 6MWT may be performed either indoors or outdoors, along a long, flat, straight, and hard surface. As recent studies have found that patients walk further on continuous (oval) tracks, the American Thoracic Society (ATS) recommends that the walking course should be 30 meters in length, marked at every 3 meters, and a turnaround point marked with a cone, however only two studies with SCI subjects have used an 18.5m and 30.0m distance with turns. The distance (number of laps, number of meters in the final partial lap, total distance walked rounding to the nearest meter) is reported, as is their fatigue level. Pulse oximetry is optional. If it is performed, baseline heart rate and oxygen saturation are measured. Equipment required to carry out the 6MWT include: a countdown timer, mechanical lap counter, cones to mark the turnaround, a chair that can be easily moved along the walking course, worksheets, a source of oxygen, sphygmomanometer, telephone, and an automated electronic defibrillator (ATS 2002). Advantages: According to the American Thoracic Society, the 6MWT is easier to administer, better tolerated, and more reflective of activities of daily living than other walking tests (ATS 2002). The responsiveness of the 6MWT to change from 3 to 12 months showed continued improvement after the WISCI had reached maximum improvement in most patients at 12 months (van Hedel et al. 2006). Limitations: There are many sources of variability including height, age, body weight, sex, and motivation (ATS 2002). Interpretability: Most 6MWTs assess whether a patients has experienced a clinically significant improvement. In order to make such an assessment, most tests will be done before and after intervention. After both tests have been completed, clinically significant improvements may be measured. For clinical purposes, it is not know how to express change. Until more research is available, the ATS recommend that change be expressed as an absolute value. For single measurements, reference equations from healthy samples using the 6MWT are not available for comparison. Acceptability: The 6MWT is suitable for patients who can walk with moderate or less assistance for 6 minutes. It is a self paced test and subjects may take stop to rest. Feasibility: It requires a hallway but no exercise equipment. People who perform the test should be trained using the standard protocol and then supervised for several tests before performing them alone. Administrator should as well have CPR training (ATS 2002). Clinical Summary: The 6MWT is a useful measure of functional capacity. The test has been widely used for pre and postoperative evaluations, and for measuring the response to interventions. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling Inter O +++ +++ Construct +++ + + N/A Intra O +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=Interobserver; Intra O=Intraobserver Rigor ++

25-58

25.3.1 Mobility 25.3.1.3 10 Meter Walking Test (10 MWT) The 10 Meter Walk Test (10 MWT) assesses short duration walking speed (m/sec). It has been used in various patient populations including stroke, Parkinsons disease, patients with general neurologic movement disorders and only recently has been assessed in individuals with SCI (van Hedel et al. 2005; 2006). The 10 MWT measures the measures the time (seconds) for an individual to walk 10 meters. It is performed using a flying start, patient walks 14 meters and the time is measured for the intermediate 10 meters. The individual walks at their preferred walking speed. Individuals can use an assistive device and must wear shoes. Procedure: The time (seconds) is reported and can also calculate a walking speed m/sec. Advantages: The 10 MWT is easy to administer in the clinical setting or in the community. The equipment required is available in the clinical setting and includes a 14 m corridor and a stopwatch. Responsiveness has been assessed in patients with incomplete SCI at 1, 3, 6 and 12 months after SCI and was reported to be superior to measures with an interval scale (i.e. WISCI II) (van Hedel et al. 2006). Limitations: The 10 MWT only assesses walking ability and does not consider the amount of physical assistance required, devices or endurance. The test is also conducted in a controlled environment (i.e. lab setting) and so results can not be directly translated to the environment (i.e. crossing a busy street). The 10 MWT also requires an individual to ambulate a minimum of 14 m. There have been reports in the literature that the distance is not always standardized (i.e. 10 m versus 14 m). Interpretability: The information obtained from the 10 MWT can be reported as a time (seconds) or a walking speed. Results of the 10 MWT have been reported in the literature for individuals with incomplete SCI. An average 10 MWT was 30+28 seconds (van Hedel et al. 2005) with a walking speed of 4.5 km h-1 (1.25 m s-1). Normative values are available for walking speed (i.e. reported to be 4.7 km h-1 [1.31 m s-1]). It is also possible to compare results for various patient populations. Acceptability: The 10 MWT is a short test taking approximately 30 sec and is suitable for individuals who can at a minimum, ambulate in household settings (i.e. > 14 m). Feasibility: The 10 MWT is quick and easy to administer in the clinical setting, does not require any special equipment, and does not require advanced training. Clinical Summary: The 10 MWT assesses short distance capacity in ambulation and other measures are required to assess balance, physical assistance required and endurance. It appears to be a useful measure in the SCI population for both research and clinical practice. The scale properties (time in sec or m/sec) of the 10 MWT make it a responsive test well suited to evaluating clinical interventions. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling Inter O +++ +++ Construct +++** + +++* N/A Intra O +++ ++ Concurrent ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver; Intra O=intraobserver; varied (re. floor/ceiling effects; mixed results). * Responsiveness assessed using the Freidmans test. ** For construct validity, the results with other walking tests (i.e. TUG & 6 MWT) were considered stronger evidence to support validity compared to LEMS based on ASIA. Rigor ++

25-59

25.3.1 Mobility 25.3.1.4 Clinical Outcome Variables Scale (COVS) The Clinical Outcomes Variable Scale (COVS) is a measure of mobility. It has been applied to general rehabilitation populations and specific diagnostic groups such as stroke, traumatic brain injury, amputations, and musculoskeletal injuries (Barker et al. 2007). It has also been applied in acute, inpatient, and outpatient rehabilitation settings, and community settings. The COVS consists of 13 items, including rolling (2items), lying to sitting (1item), sitting balance (1 item), transfers (2 items), ambulation (4 items), wheelchair mobility (1 item), and arm function (2 items). Each item is scored on a 7-point scale ranging from 1(fully dependent mobility) to 7 (normal independent mobility). In a SCI population 2 subscales have been reported: 1) general mobility with scores ranging from 7-49; and 2) ambulation with scores ranging from 5-35) (Campbell & Kendall 2003), Procedure: The COVS can be conducted via in-person interviews or over the telephone. A recent study by Barker et al. (2007) found equivalence and test-retest reliability of the telephone COVS (TCOVS) when administered by trained raters. If administering over the phone, written questions are provided to participants in advance. If administering in-person, the items are rated by a clinician through observation and assessment of task performance. Equipment to administer the COVs includes bed sticks, bed ladders, lifting blocks, transfer boards, leg straps, exercise mat, ramp (1inch to 12inch rise), and a 6 inch platform. Advantages: The tool offers a more relevant and complete profile of mobility after SCI when compared with other mobility tools. The COVS appears to have face validity in that the individual items represent reasonable and appropriate aspects of functional movement rehabilitation for individuals following an SCI (Campbell and Kendall 2003). According to Barker et al. the TCOVS provides a convenient, time efficient, and geographically inclusive method for the collection of data. Limitations: The design of the sitting balance and wheelchair mobility items descriptors may lack sensitivity (Barker et al. 2007). Investigation of intrarater and interrater reliability as well as internal consistency and responsiveness is still needed (Campbell & Kendall 2003). Interpretability: COVS scores are generally reported as a single score ranging from 13 to 91. The general mobility subscale has scores that range from 7-49, and the ambulation subscale has scores ranging from 5-35. Lower scores reflect poorer levels of mobility. Acceptability: No different formats or translations other than English were found. Feasibility: Assessment via telephone interview takes 5 minutes. In-person assessment takes 35 minutes. Raters should be trained in the administration of both the COVS and TCOVS. A copy of the COVS can be found in the paper by Campbell and Kendall (2003. Clinical Summary: The use of the subscale COVS format may improve usefulness in clinical practices such as treatment planning, goal setting, goal attainment reviews, and discharge planning (Campbell and Kendall 2003). The TCOVS, when used by trained raters, offers a feasible and highly reliable method for assessing mobility in the home environment (Barker et al. 2007). Psychometric Summary
Reliability Rigor Results Rigor ++ COVS Validity Results Discriminant ++ TCOVS Validity Rigor Responsiveness Results Floor/ceiling

Reliability Responsiveness TR +++ ER +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test Re-Test; ER= Equivalence Reliability between COVS and TCOVS ++

25-60

25.3.1 Mobility 25.3.1.5 Capabilities of Upper Extremity Instrument (CUE) The Capabilities of Upper Extremity Instrument (CUE) is a 32 item measure of functional limitation assessing the amount of difficulty experienced in performing specific actions with one or both arms and hands in individuals with tetraplegia (Marino et al. 1998). The CUE assesses upper extremity function rather than hand function alone. Fifteen items inquire about unilaterally (left and right) hand (n=6 items) and arm function (n=9 items) and 2 items assess bilateral hand and arm use. Questions focus on the individuals ability to: reach or lift; pull and push with their arms; move and position their arm and wrist; use their hand and fingers; and press with the tip of the index finger. Items for the CUE were derived from literature review, discussions with occupational/physical therapists, observation of patients and viewing of the FIM training video. Procedure: Interview format. Responses are given on a 7-point scale representing selfperceived difficulty in performing the action, with 1 representing unable to perform and 7 representing can perform without difficulty. A total score can be derived by summing responses to all items. Advantages: If therapies are being designed to improve hand function rather than overall neurological function, the two hand portions of the CUE could be used to analyze the success of these therapies (Marino et al. 1998). This would assist in reducing the response burden and random error by eliminating the scales that are not expected to change. Limitations: The agreement between self-reports and observed capabilities have not yet been determined. The instruments responsiveness has yet to be established. Further work is needed to determine if fewer response levels would improve the psychometric properties of the CUE (Marino et al. 1998). Focus is on disability rather than ability. Interpretability: Item by item results of the test are straight forward to interpret. Total scores range from 32 to 224 with higher scores reflecting better function. Left and right arm/hand function can be derived separately. A percent of normal function score is also possible using the following algorithm ((total score 32) / 192 * 100%. In a case series study Mulcahey et al (2004) demonstrated that the individual items for hand function were able to distinguish improvements when FES was used. Unpublished data suggests the CUE reported an effect size of moderate strength (Marino, Acceptability: The method of item generation would suggest the CUE is likely to be widely accepted with therapists and individuals with an SCI. Feasibility: The CUE, which is available in only in English, takes about 30 minutes to complete and requires no training or special equipment. Administration of the measure would be simplified by having fewer choices. A copy of the latest revised instrument (2006) is available online at www.spinalcordcenter.org/research/cue/cuev1_1.pdf. Authors ask those who use the tool not to change or modify it. Clinical Summary: The CUE has considerable potential clinical appeal because it reflects both hand and/or arm function and scores can be derived for either limb which is appealing given the number of individuals with incomplete injuries. The time to complete the tool may be a concern however the items cover the spectrum of hand/arm function and therefore the CUE provides a comprehensive clinical picture of function. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Discriminant ++ ++ ++ ++ TR +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-61

25.3.1 Mobility 25.3.1.6 Functional Standing Test (FST) The Functional Standing Test (FST) is designed to assess an individuals ability to perform one handed reaching tasks while standing (Triolo et al. 1994). This test was originally developed using able-bodied individuals and has been modified for individuals with SCI. The FST is unique because it defines standing as a stable upright posture that frees at least one upper extremity to manipulate objects, while other standing tests focus on specific factors such as balance, endurance, coordination etc. The FST consists of 21 tasks, 6 of which are the same as in the Jebson Test of Hand Function. Tasks involve gross to fine motor skills, crossing midline, lifting and lowering light and heavy objects to and from a set of shelves which is intended to simulate a kitchen cabinet. Examples of tasks include: lifting light objects down from the lowest shelf; stacking checkers on the counter top at the midline; lifting heavy objects up to the top shelf. The tasks are done as quickly as possible and the individual is allowed to use assistive devices such as knee-ankle-foot-orthoses (KAFO) or functional neuromuscular stimulation. A practice test is not required based on the data from able-bodied individuals. Procedure: The time in minutes/seconds to complete each of the 21 tasks is recorded. Advantages: It evaluates the functional ability of standing while using technology. The tasks simulate skills required to work in a kitchen environment but theses skills are easily transferred to other environments (e.g. shopping). The tasks cover a broad range of difficulty. Limitations: There has been limited testing of the FST in individuals with SCI and it has been done in individuals with T3-6. Some tasks were not reliable in individuals with SCI (i.e. total standing time, lifting heavy objects down from low shelves, pulling objects from the nondominant side and pouring). Caution must be used when comparing to able-bodied data since only half of the tasks were equally reliable between groups (i.e. SCI and able-bodied) (Triolo et al. 1994). Interpretability: The FST could be used to assess which types of technology maximize standing balance. Information from the FST provides a measure of an individuals skill/capacity to perform various tasks while standing. The FST was originally developed and tested on 69 able-bodied adolescents, so some data is available to compare to able-bodied individuals. Acceptability: The FST was tested in individuals who were one year post injury and who received therapy using assistive devices (i.e. KAFOs). The time to complete the entire test (i.e. total standing time) was 15.58 + 2.99 minutes. Time required for each task ranged from 1.86 to 13.70 seconds for individuals with SCI. Feasibility: Equipment is required to conduct the FST and includes the standard Jebson Test board and a set of shelves mounted on a counter top 36 inches high in order to simulate a kitchen cabinet. This type of equipment may not be available in most clinical or research settings. Training is required to administer the test. Clinical Summary: The FST has been used to assess functional tasks while standing in individuals requiring technological assistance (i.e. KAFOs or functional neuromuscular stimulation). It is a potentially useful measure for individuals with SCI but more research is needed to assess modifying the test (removing the unreliable items) and assessing the validity and responsiveness. The specialized equipment may limit its usefulness in some clinical/research settings. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ Inter O +* + SS + N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver; SS=Sensitivity/Specificity * Note: the ICC values for the IO reliability ranged from 0.13 0.98. If the tasks that were identified as being unreliable in the SCI group were eliminated, then the results for reliability would be assessed as ++.

25-62

25.3.1 Mobility 25.3.1.7 The Grasp and Release Test (GRT) This grasp and release test (GRT) was designed to assess hand neuroprosthesis in individuals with a C5-C6 level of injury (Stroh Wuolle et al 1994). The test was designed specifically for use among people with C5-C6 level SCI, but has also been used to assess hand function prior to and following tendon transfers in people with C6-7 level injuries (Harvey et al. 2001). It assesses the ability to pick up, move and release six objects of varying sizes, weights and textures using a palmar or lateral grasp (Stroh Wuolle et al 1994, Harvey et al. 2001). The objects used in the GRT include a peg, paperweight, fork, block, can and videotape. Each object/tasks was chosen to represent one or more objects routinely manipulated for activities of daily living (ADL) that represented a range of difficulties. Procedure: Clinician administered standardized performance test. Specific instructions are provided for establishing the start position and for recording a successful completion of the task (Stroh Wuolle et al, 1994). Subjects are scored on their ability to successfully move each of the objects as many times as possible in 30 seconds. Each hand is tested and scored separately. A pretrial practice test for each object is permitted and practice continues until a successful completion is achieved. Advantages: The GRT was specifically designed to address methodological (e.g./learning, inadequate standardization) shortcomings that the authors observed in other measures (Stroh Wuolle et al, 1994). The original development was designed around evaluating the efficacy of hand neuroprostheses in individuals who have sustained a C5 or C6 SCI injury and therefore it provide a targeted clinical tool. Recent study of the measurement properties indicates that the tool has exceptional reliability and support for validity (Mulcahey et al, 2004) including evidence of the ability to detect change after treatment (responsiveness) (Mulcahey et al, 2004; Stroh Wuolle et al, 1994). Limitations: The measure was designed to test only hand function of neuroprosthesis use but other have used it for evaluating other treatments such as FES (Taylor et al, 2002). Completion of the tool may vary depending on the individuals abilities. For example, subjects with paralysis of the finger and/or thumb flexor muscles are generally unable to hold the fork or paperweight between the thumb and index finger (Harvey et al. 2001). Floor effects are possible. Interpretability: A summed score for each subject is calculated by adding the item scores. If a subject failed to move an item in the pre-test they scored zero for that particular item (Harvey et al. 2001). Single item may be used or a total test score can be derived by summing the number of completed tasks over all of the items. Acceptability: There is minimal burden associated with this test and with practice it should take no 20 minutes when pretest is conducted. Items for the GRT are important for hand/grasp function. Feasibility: The test includes standardized equipment, procedures, and instructions. The tool is available in English and the test kit is available from Neurocontrol Corporation in Cleveland OH. Clinical Summary: This is a well standardized quick test of hand function that would be appropriate for a limited sub-sample of individuals with SCI. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ TR+++ ++ Criterion +++ ++ +++ ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test retest

25-63

25.3.1 Mobility 25.3.1.8 Hand-Held Myometer The Hand-Held Myometer is a portable device used as a quantitative and objective method of muscle assessment (Swartz et al. 1992). Testing is performed using one of two techniques, 1) make or 2) break. The make technique requires the examiner to resist a maximal voluntary contraction by the patient, thereby producing an isometric contraction. In the break technique, the examiner applies adequate force to overcome the patient, thereby producing an eccentric contraction. Procedure: Clinician administered. The mean force of three administrations for each muscle group tested is usually preferred (Noreau et al, 1998) and some investigators suggest a practice trial (Andrews et al, 1996). A break of 5 to 10 seconds between trials is suggested. The starting position of the individual and the myometer is critical and encouragement to maximize muscle contraction is suggested (Noreau et al, 1998). The recommended unit of measurement is Kg in order avoid interpretation issues (Herison et al, 1996). Generally measurements are rounded to the nearest Kg. Advantages: The myometer combines some advantages of both the manual muscle testing (MMT) and conventional force-gauge testing. It is portable and can be used to test multiple muscles. It is also superior to MMT for detection of mild and moderate weakness and changes in muscle strength (Burns et al. 2005). The myometer technique also eliminates potential bias from the evaluator for various age groups and gender (Noreau & Vachon 1998). Computer software is available to assist with data analyses. Limitations: A weak examiner performing the make-technique testing may not provide enough resistance to allow the subject to exert a maximal contraction, resulting in a low strength measurement (Burns et al. 2005). The initial cost of the instrument may be seen as a barrier particularly if computer programs are used for data analyses/presentation. Interpretability: A predicted muscle force can be calculated by taking into consideration the individuals gender, weight, and age. By comparing the predicted force to the observed force, an estimate of percentage of deficit may be determined. Normative values for various adult age groups are available (Andrews et al. 1996). Meaningful cut-points have not been reported and responsiveness data are not readily available however Herbison et al, (1996) and Schwartz et al (1992) report that myometer readings are more responsive to change than manual muscle testing. Herbison also suggests a method for estimating the level of responsiveness. Acceptability: The test can be rather long to complete for the subjects and multiple position changes are required to capture maximal muscle contractions. Feasibility: The test takes approximately 30 minutes to perform a bilateral assessment of the upper extremity and it takes much more time for positioning than MMT. Initial cost of the device is also seen as a limitation to its general use. Testing procedures are available (Andrews et al. 1996; Noreau et al, 1998). Clinical Summary: Myometer testing presents an objective, quantifiable method of measuring muscle strength however this does not necessarily reflect function. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ InterO +++ N/A N/A N/A N/A N/A TR ? Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; InterO=interobserver

25-64

25.3.1 Mobility 25.3.1.9 Jebsen Hand Function Test The Jebsen Hand Function Test (JHFT) was developed to provide a standardized and objective evaluation of several major aspects of hand function using simulated activities of daily living. Fine motor, weighted and non-weighted hand function is assessed through 7 subtests: writing, turning over 3 by 5 inch cards, picking up small common objects, simulated feeding, stacking checkers, picking up large objects and picking up large heavy objects. The test was originally tested on 60 normal subjects, 10 subjects with rheumatoid arthritis, 12 subjects with unilateral hemiparesis, and 11 subjects with traumatic quadriparesis. Procedure: This is a behaviourally based performance test. The scoring method is the time necessary to complete each subtest recorded to the nearest second. The results are measured by using a stop watch. The subtests are highly standardized and were designed to be administered in precisely the same manner to each subject (Jebsen et al. 1969). Patients are required to perform all of the subtests with both the right and left hands however the nondominant hand is tested first (Jebsen et al.1969). Advantages: The tool is easily administered and has standardized procedures (Spaulding et al. 1988). Normative data is available for the US and Australian populations. Limitations: The JHFT only assesses the speed and not the quality of performance (Spaulding et al. 1988). Persons developing hand function tests based on the Jebsen test may wish to consider the writing and simulated feeding subtests as weaker elements and thus substitute these tasks with more reliable behaviors (Stern 1992). Moreover reliability for writing and simulated feeding subtests is less stable and results should be interpreted with caution (Stern, 1992). Fifty score sheets are provided with the initial purchase and additional score sheets must be purchased to avoid copyright infringement. Interpretability: Test results appear easy to interpret. Norms are available with the instruction manual. Slow times reflect a less desirable performance outcome. Acceptability: The use of the hands by tetraplegic patients to perform push-ups in their wheelchairs is important, however, it is not included in this test. As a result, this should be kept in mind when administering the test (Jebsen et al. 1969). The JHFT is only available in English. Results from application with patients who have English as a second language should be interpreted with caution. A modified 3 item version has been developed for individuals who have had a stroke (Bovend Erdt et al. 2004). Feasibility: The instrument takes 30-45 minutes to complete. Scoring the test may take an additional 15 minutes. Training is not required however given the standardized nature of the JHFT assessors should refer to the Jebsen paper for details on how to administer the test (Jebsen et al.1969). The test can be purchased through many online rehabilitation equipment and testing companies with costs varying from $250 to $800 (US). Clinical Summary: The JHFT represents one of the oldest standardized of hand function and was developed using individuals with SCI as apart of the sample. It can be completely in a reasonable amount of time. The measurement properties for the spinal cord population are limited to reliability estimate. Given the use of a timed outcome it would seem that there should be limited floor effects for a population of individuals with hand impairments. The outcome provides a measure of hand function speed but quality of performance is not taken into consideration. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR +++ N/A N/A N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test

25-65

25.3.1 Mobility 25.3.1.10 Modified Functional Reach Test (mFRT) The Functional Reach Test (FRT) was originally designed as a simple reach test designed to assess standing balance. Lynch et al. (1998) modified the FRT to assess sitting balance in individuals with SCI (i.e. modified FRT), since no suitable measures existed at the time this paper was published. Sitting balance was defined in the study as the ability to maintain control over upright posture during forward reach without stabilization (Lynch et al. 1998). The individual is seated on a bench and the maximum distance forward they could reach was measured with the upper extremity flexed to 90 degrees. The anatomical landmark was the ulnar styloid process since individuals with tetraplegia could not make a fist. No weight bearing was allowed through the non reaching arm. The individual is allowed two practice trials and then the following three trials are recorded. Procedure: A clinician administers the test. The average of the three trials is reported in either cm or inches. Advantages: The mFRT is a very functional activity that is required in daily living. It can distinguish between individuals who have abdominal and back extensors (i.e. high tetraplegia/high paraplegia versus low paraplegia) but not between individuals with high lesions. Information from the mFRT may be assist clinicians in prescribing equipment (e.g. cushions and wheelchairs) to maximize sitting balance (Lynch et al. 1998). Limitations: The mFRT requires an individual to have 90 degrees of shoulder flexion and it is therefore not suitable for individuals with limited range of motion or musculoskeletal deformity. More data on the psychometric properties of the test is required since the only data published in on the test re-test reliability with just one rater using a small sample of men (Lynch et al. 1998). Interpretability: No normative data exists for the mFRT for any health care condition at this time. Lynch et al. (1998) reported that the maximal reach for C5-6 group was 14.7+ 7.6 cm (3.3-27.4); T1-4 was 15.5 + 4.3 cm (7.6 -21.3); and T10-12 was 22.9 + 5.6 cm (14.7-29.2). Acceptability: The mFRT has been developed specifically for individuals with SCI. As long as an individual has 90 degrees of shoulder flexion, then it is possible to complete the test. Feasibility: The equipment required should be available in a rehabilitation setting. It includes: a meter stick/yardstick (attached horizontally to the wall); seat (mat or bench approximately 61 cm in width); and a backboard (at an angle of 80 degrees). Clinical Summary: The mFRT can be used to assess sitting balance in individuals with SCI. It may prove to be a useful tool to assist clinicians in prescribing equipment and to evaluate the effects of rehabilitation therapy. More research is required to establish its psychometric properties before it should be used to evaluate clinical interventions (Lynch et al. 1998). Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR +++ N/A N/A N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test

25-66

25.3.1 Mobility 25.3.1.11 Rivermead Mobility Index (RMI) The Rivermead Mobility Index was originally developed to measure mobility among head injury and stroke patients (Hseih et al. 2000). It is a 15-item scale which evaluates patients bed mobility, postural transfers, and walking ability. The RMI comprises 14 questions and one direct observation, and covers a range of activities, from turning over in bed to running (Hsieh et al. 2000). Procedure: The RMI uses a combined interview and observation format. Question 5 requires the patient to stand for 10 seconds without any aid. The other questions require the patient to respond either yes (scored 1) or no (scored 0). For question 5, if the subject can stand for 10 seconds, a response of yes is indicated. Advantages: The RMI is quick to perform. Its ease of use makes it suitable in the hospital or at home (Hsieh et al. 2000). Limitations: Little research involving the use of the RMI has been published and only validity data is available (Morganti et al, 2005). The few studies which have employed the RMI do provide support for its broader application (Forlander & Bohannon 1999). As only one study that assesses criterion validity among SCI patients was found, further psychometric testing of the RMI is needed. The instrument does not specify differences in braces or devices (Morganti et al. 2005). Interpretability: Scores for the 15 items are summed. The range of scores is between 0 (poor mobility) and 15 (good mobility). No information is available regarding norms or meaningful cut scores. Acceptability: The instrument appears simple to complete, however several questions refer to either walking or running which may not be appropriate for all SCI patients. There is minimal patient or clinician burden to using the RMI. Feasibility: The RMI takes 3-5 minutes to complete. It is a simple instrument that can be performed in home, institutional or office settings (Forlander et al. 1999). A copy of the RMI is available in the paper by Forlander et al. (1999). No formal training is required however knowledge of SCI is beneficial. Clinical Summary: Measures of mobility are important for the SCI population. The RMI was not designed to be used in SCI and minimal psychometric data is available to support its use. Despite limited burden and ease of use this tool is not recommended for use at this time. Psychometric Summary Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling N/A N/A ++ Criterion +++* N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information * correlated with WISCI, SCIM, FIM and BI.

25-67

25.3.1 Mobility 25.3.1.12 Sollerman Hand Function Test The Sollerman Hand Function Test was developed to provide an overall measure of hand and grip function when engaging in activities of daily living (ADL) (Sollerman & Ejeskar 1995). The test has been used to assess hand function in those with a spinal cord injury (tetraplegics), those with rheumatoid arthritis, finger amputees, nerve injured persons, and those with impaired range of motion (van Tuijil et al. 2002). It was designed to measure grips that are needed for certain ADLs such as: eating, driving, personal hygiene, and writing. The test includes 20 subtests that represent seven common handgrips including volar, transverse volar, spherical volar and pinch positions including pulp, lateral, tripod, and the five finger. The subtests include activities such as using a key, picking up coins from a flat surface, writing with a pen, using a phone and pouring water from a jug. Scoring takes into account the time taken, level of difficulty displayed, and the quality of performance using the correct pinch or grip position. Procedure: Clinician administered standardized performance test. A test box is place in front of the patients who are required to start each subtask in a seated position but they may stand to complete a task if necessary. Three subtasks are completed using the hands bilaterally while the rest are completed with each hand separately. The subtests are timed and the performance is observed. Patients are then scored on a 5-point scale from 0 (task cannot be performed at all) to 4 (task is completed without any difficulty within the time frame (20 seconds) and with the prescribed hand-grip of normal quality). Special equipment is required. Advantages: The test is comprehensive, yet simple and quick to complete. It can be used by clinicians who have little experience. Strong measurement properties have been reported. Limitations: The testing procedure was designed specifically for the Swedish culture and as such, some of the tasks and scoring may have to be adjusted for other cultures. It also yields a score which is assumed to correspond to the function of the hand in ADL and as there is no measurement for comparison, it is difficult to judge how accurate the score is (Sollerman & Ejeskr 1995). Scoring the test can be challenging as the assessor must be aware of multiple factors all occurring at once (passage of time, difficulty, correct positioning and quality of performance). Definitions to interpret the scoring scheme are not inherently obvious. Interpretability: A total sum score is created by adding up the scores from the different subtests. Scores range from 0 to 80 with higher scores reflecting a better performance. Subjects with no hand function impairment typically score 80 with the dominant hand and 77-79 for the non-dominant hand. Responsiveness estimates are necessary to determine the ability of the Sollerman to detect change after treatment. Acceptability: Most patients appear to have little difficulty performing the tests tasks within the time limits (Dellhag & Burckhardt 1995). This test was designed with tetraplegic patients in mind and therefore reflects the needs of this group. Feasibility: The tool is available in English and takes about 20-25 minutes to complete (one minute for each subsection plus introduction of the test). A copy of the test and a list of materials needed to complete the test can be found in Sollermans paper (Sollerman & Ejeskr 1995). It can be completed by a clinician with little or no training or experience using the test. Knowledge of hand function is an asset when scoring. Sollerman and Ejeskr (1995) make reference to a manual which provide specific instructions. Presumably the authors will provide copies. Clinical Summary: Unlike the Jebsen Hand Function Test the Sollerman considers the quality and level of difficulty with the performance which are important components with respect to hand function. This test has many appealing features for use in assessing people with tetraplegia. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ InterO +++ ++ Criterion +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; InterO=interobserver

25-68

25.3.1 Mobility 25.3.1.13 Tool for assessing mobility in wheelchair-dependent paraplegics The tool is used to quantify the mobility of manual wheelchair-dependent paraplegics. Originally, the tool quantified patients independence in performing an extensive range of the mobility skills learned in physiotherapy programs (Harvey et al. 1998). As this original tool was comprehensive, it was also complicated and took an excessive amount of time to administer. The tool was therefore modified to examine 6 key tasks that represent the array of motor tasks learned by patients, including: moving from lying to sitting, completing a horizontal transfer, completing a vertical transfer, pushing a wheelchair on flat ground, pushing a wheelchair up and down ramps and negotiating curbs in a wheelchair. Procedure: This is a performance based assessment. For each task, subjects are scored on a six-point scale with 6 representing complete independence, or a task where the patients provides 100% of the effort required to complete the task and the patient does not require any supervision or verbal prompts, and 1 representing total assistance for a task, or where the patient provides less than 25% of the effort required to complete the task. Patients must perform the tasks in the following order: task 1 = supine to long sitting; task 2: horizontal transfer; task 3 = vertical transfer; task 4 = push on flat; task 5 push on ramp; task 6 = negotiate curbs. For tasks 2 through 6, the patients are allowed three attempts with the best score recorded. If a task is not attempted, not applicable is recorded; not a score of 1. Advantages: The results of the assessment tool summarize the basic level of wheelchair mobility of patients in a manner that is readily understood by other professionals (Harvey et al. 1998). Limitations: An overall score cannot be derived as a result of the inclusion of tasks of differing complexities. Limited psychometric data is available at this time. Interpretability: Higher scores indicate greater independence. The scores for each task are not meant to be added together to give an overall score. Rather, each task is given a score and interpretation is in relation to that specific task. No norms or cut scores are available at this time. Acceptability: The assessment scale is simple, meaningful, and includes the diversity of the tasks fundamental to the mobility of wheelchair-dependent paraplegics. The inclusion of tasks of differing complexities makes the tool applicable to measuring the mobility of competent and less competent patients. Feasibility: The assessment can be completed by a trained physiotherapist in less than 15 minutes. No specialized equipment is necessary for tasks 1 to 3, however, for completion of tasks 3 to 6, a 25 meter hallway, cones, a 15 meter ramp, and curbs 2.5 cm and 15 cm high are required. A copy of the assessment is available in the paper by Harvey et al. (1998). Clinical Summary: This assessment tool provides a standardized scoring scheme to 6 basic manual wheelchair tasks which are routinely covered by therapists who assess and teach manual wheelchair skills. At present the tool only has data to support the use with wheelchairdependent paraplegics. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IO +++ N/A N/A N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IO= Inter-observer

25-69

25.3.1 Mobility 25.3.1.14 Tetraplegia Hand Activity Questionnaire (THAQ) The Tetraplegia Hand Activity Questionnaire (THAQ) is a disease specific measure (Land et al. 2004) of arm and hand function of individuals with tetraplegia. The scale was designed to provide information on the body function, activity and participation levels of the WHOs International Classification of Function. It consists of 153 items within 9 subclasses: self-care (22 items), dressing (15 items), continence (15 items), mobility (14 items), eating and drinking (25 items), work/admin/telecom (17 items), leisure (10 items), household (13 items) and miscellaneous (22 items). Items are scored based on 3 dimensions Performance or Doing (0= without difficulty to 3=help from others); Use of an aid (0=never and 3=always); Importance of performing activity independently (0=not important to 2 very important). Procedure: Information is collected using an interview format Advantages: The THAQ was designed to be sensitive to treatment effects of interventions of the arm and hand for tetraplegics who traditionally score poorly on other measures that are designed for paraplegics. Conceptually well founded and well developed using items identified as important by expert clinicians and clients. The THAQ focuses on the activities that individuals do versus what they can do in a treatment setting. Limitations: Information on psychometric properties is not yet published. Currently there are no studies using this tool in the literature. It is not clear at what point the THAQ should be administered (acute/chronic, inpatient, outpatient, after community reintegration). Interpretability: No information regarding interpretability of the scores (e.g. norms). Acceptability: Specific to the tetraplegic population; individual items identified by client population. At present the THAQ is available in English but no other language. Feasibility: No special training is required to administer the THAQ although experience is likely an asset. It takes 30-45 minutes to complete. Contact Land et al. (2004) for a copy of the tool. Clinical Summary: The THAQ is a SCI specific questionnaire used to assess performance, use of an aid and importance in completing actual activities. It has relevant application for individuals with tetraplegia who have completed in-patient rehabilitation. The test may not be useful when the individual is an in-patient as exposure to out of facility activities related to community living, work, leisure, which are not typically addressed in early phases of in patient rehabilitation. The THAQ could potentially be used as a method of goal identification for intervention and/or as a test to measure change after intervention. However, while the THAQ is promising considerable additional development and psychometric assessment is required before recommendations can be made to use the scale clinically. Psychometric Summary:
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-70

25.3.1 Mobility 25.3.1.15 Timed Motor Test (TMT) The Timed Motor Test (TMT) is a performance test assessing function for children with SCI who use a manual wheelchair. It was developed because existing functional measures for children either measure burden of care/assistance required (i.e. Wee FIM) or are not appropriate for children requiring a wheelchair (i.e. Pediatric Outcomes Data Collection Instrument or the Pediatric Quality of Life Inventory include walking related tasks/questions)(Chafetz et al. 2004). The TMT includes 6 tasks: donning a shirt; donning sweat pants; performance of even transfers; performance of uneven transfers (4 inch height difference); wheelchair propulsion on even surfaces; and wheelchair performance up a ramp. The individual completes each task 5 times, except for wheelchair skills which is only done 3 times. They are instructed to complete the task quickly but safely. If they are unsuccessful in completing the task, they can re-try it and if they are not able to complete all 5 trials then no time was reported. If the individual requires more than 20 seconds to complete the task then it is considered incomplete. Procedure: A clinician records the time (seconds) to complete each task. Based on the results of the reliability data it was decided to use the fastest 3 trials for scoring each task. Advantages: The TMT includes common ADL tasks for children with SCI. This test can be used to assess the impact of wearing a brace such as a TLSO on everyday function (Chafetz et al. 2004). An objective scale such as time (seconds) is useful to detect change. The necessary equipment for the TMT is usually available in the rehabilitation setting and includes: adjustable mat; an 80 foot (24.3 m) corridor; and a 45 foot (13.72 m) ramp with an 8 degree angle. Limitations: Only reliability data has been reported and there is a need to conduct more research to assess the validity and responsiveness of the TMT. It may be tiring for some children to complete each task 5 times. There is no information regarding how the TMT compares to other manual wheelchair tests. Interpretability: The TMT is designed to assess the capacity to perform ADL in children with SCI (Chafetz et al. 2004). This tool is still in the early stages of development and more research is required to determine how to score it (i.e. confirm that the 3 fastest trials should be averaged). No norms are available and the results for the 3 fastest trials for each task were not reported. Acceptability: All individuals were able to complete 5 trials of the TMT (except 3 trials of the wheelchair skills) without a brace (i.e. TLSO) but some of the tasks (i.e. donning pants and propelling the wheelchair on flat surfaces and a ramp) were more difficult with a brace. Feasibility: It takes between 6090 minutes to complete. No special training is required. Clinical Summary: The TMT is potentially useful measure for in-patient or out-patient rehabilitation settings to assess the impact of interventions (e.g. surgery or braces) on function for children requiring manual wheelchairs. More research is needed to assess the psychometric properties (i.e. reliability, validity and responsiveness). Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ TR ++* ++ Construct ++** N/A N/A N/A ++ Inter O +++ ++ Intra O +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; Inter O=interobserver; Intra O=intraobserver * TR values for each of the 6 tasks were >0.75 for 4 tasks, 0.67 for one task and 0.30 for one task. An overall value of adequate (++) was selected to best represent the range of values. ** There is support for construct validity by using the data comparing known groups (TLSO versus no brace). F values were reported and 5 out of 6 tasks demonstrated that the TLSO times were significantly (p<0.05) compared to no brace.

25-71

25.3.1 Mobility 25.3.1.16 Timed Up and Go Test (TUG) The Timed Up and Go Test (TUG) is a timed walking test designed to measure gait performance and balance. It was originally developed as a clinical measure of balance in elderly individuals (Mathias et al. 1986). The individual is instructed to stand up from an arm chair, walk 3 meters, return to the chair and sit down at their preferred walking speed. Assistive devices can be used. A practice test is recommended to improve the reliability of the test. Procedure: The individual is timed and a score is reported in seconds. Advantages: The TUG is a quick and easy test to administer and can be done in any setting (i.e. clinical setting or community). The task is very functional and incorporates mobility, balance and lower extremity leg strength. Limitations: The distance walked in the TUG is only 3 meters and so it is not a good test of endurance. The test has also not been reported to be reliable in individuals who require longer than 40 seconds to complete the test. To date the TUG has not been widely used in the SCI patient population. In order to complete the TUG an individual is required to be able to stand up from sitting and walk 3 meters and so it may not be suitable for some individuals with SCI who are not able to do both of these skills. Interpretability: Results from the TUG provide an objective measure of time required to complete functional task. Results from the study by van Hedel et al. (2005) reported that the time required to complete the TUG ranged between 8 and 156 seconds, with a mean of 36+27 seconds. Since the TUG has been used in other patient populations (e.g. elderly, stroke etc.) it is possible to compare results, but it will not be possible to determine if an assistive device was used. Acceptability: The TUG appears acceptable to individuals (i.e. all individuals completed the test). Feasibility: The TUG is easy to administer in the clinical setting and does not require any special training to administer. The equipment required is commonly found in most clinical settings and includes an armchair, stopwatch, and 3m corridor. It is difficult to obtain information on how to standardize the test as it has been used in various patient populations and the details of how it was administer are not always clearly stated (e.g. can an individual turn to their right or left, height of the arm chair, number of practice tests, what is a preferred walking speed, etc.). Clinical Summary: The TUG appears to be a very useful measure for individuals with incomplete SCI who have lower extremity function and provides some information on a basic mobility task. The TUG may be useful to assist in the clinical assessment of whether an individual should ambulate or use a wheelchair in a home environment. More research is required to assess the psychometric properties, especially responsiveness in individuals with SCI before it should be used to assess clinical interventions. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR< 40 sec +++ ++ Construct +++ N/A N/A N/A TR>40 sec + Inter O<40 sec +++ Inter O>40 sec ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; InterO=interobserver Rigor ++

25-72

25.3.1 Mobility 25.3.1.17 The Van Lieshout Test Short Version (VLT-SV) The van Lieshout Test (VLT) was originally developed to assess basic functional modalities of the arm and hand in individuals with a cervical level spinal cord injury (C-SCI). The test assesses positioning and stabilization of the arms, opening and closing of the functional hand, grasping and releasing of the hands, and manipulation of the thumbs and fingers. The original evaluation consisted of 19 tasks and takes between 60 and 90 minutes to complete (Post et al. 2006). The 10 item VLT-SV was created to shorten the administration time using items from the long version that were characterized by: 1) high item-rest correlations; 2) non skewed score distribution; and 3) items that required manipulation of objects (Post et al. 2006). The 10 items of the VLT-SV assess forward reaching, arm extension against gravity, thumb closure, finger strength, pen grip, lighting a match and opening a bottle (Spooren et al. 2006). Procedure: Clinician administered standardized performance test. All tasks are performed while the patient is seated in their wheelchair for the best hand only. The VLT-SV is scored on a 6point scale, where 0 = task was not possible, and 5 = highest level of accomplishment. Individual item scores take into count the ability to complete the task, behavioural quality of performance (e.g./accuracy of task completion) and independence in performing the task without using external support (e.g./assistance of the contra-lateral arm). Advantages: The instrument takes less time to administer than the Grasp and Release Test. The VLT-SV is useful in establishing treatment goals as the test provides detailed information about how the tasks of the test are carried out. Correlations between the original VLT and the short version are high (0.90 and 0.93) indicating the shorter version (VLT-SV) is representative of the original version (VLT). Strong reliability and validity including responsiveness values are available for the VLT-SV. Detailed and mutually exclusive descriptions appear to be provided for the response categories of each item. Limitations: The tests measurement properties have only been assessed for the Dutch version. English and German versions are available but the measurement properties have yet to be tested. Current published literature does not provide details about standardization of the test (e.g./ table heights, distance of reaching tasks, etc.) Interpretability: A total score may be calculated by summing the scores of all 10 items. Scores range from 0 to 50 with higher scores indicating greater functional ability. Moderate to large standardized response means and small to moderate effect sizes are reported across ASI levels (Spooren et al, 2006) with largest responsiveness values noted for the time period from admission to discharge from rehab and smallest values post discharge from rehabilitation. Acceptability: The VLT-SV takes around 25 35 minutes to complete. It was developed with the SCI population in mind particularly those individuals with cervical injuries implying appropriate item selection / challenge. During administration of the test, the patient and clinician together identify for the best way to complete the task. Feasibility: The test seems quick and easy to administer. Dutch, English, and German versions of the test are available from George van Lieshout at g.vlieshout@irv.nl. Manual should be consulted for details regarding standardization. Training or practice may be useful. Clinical Summary: The VLT-SV presents as a promising new measure that should be able to capture evidence of change in hand function. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Construct +++ ++ +++ ++ InterO +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC = Internal Consistency; InterO = interobserver

25-73

25.3.1 Mobility 25.3.1.18 Walking Index for Spinal Cord Injury (WISCI) and WISCI II The WISCI a measure of ambulation was developed for specifically for SCI clinical trials using a modified Delphi technique (Ditunno et al. 2000). Existing measures of function (e.g. FIM, Barthel Index, Rivermead Mobility Index) do not adequately measure walking ability due to the limited scale responses (i.e. not sufficient incremental differences between levels). The WISCI evaluates the amount of physical assistance, braces or devices required to walk at 10 m. The original WISCI incorporated 20 levels, including increasing levels of physical assistance and devices (arm devices for using parallel bars, walkers, crutches and canes as well as leg braces) required for walking. Level 0 was patient is unable to stand and/or participate in walking to level 19 ambulates with no devices, no braces and physical assistance, 10m. The WISCI II contains an additional item ambulates with no devices, with brace and no assistance (Ditunno & Ditunno 2001; Ditunno et al. 2005; Morganti et al. 2005). Ten meter distance selected as it represents household ambulation and it represents the international metric. Procedure: The clinician observes and rates the level which the person is considered safe. For the WISCI II, a score from 0 to 20 is assigned. It is not clear if practice tests are allowed. Advantages: The WISCI II is an SCI specific test. It covers the entire range of walking ability. Unlike other tests such as the Timed Up and Go, the WISCI II scoring includes the type of assistance or device required. A score is possible even if the individual cannot walk 10 m. The hierarchical ranking of the WISCI II scale has been validated by demonstration of monotonic progression of walking capacity (Ditunno et al. 2008). Limitations: The WISCI II does not consider walking speed or energy consumption required for walking or an indication of endurance since the distance covered is only 10m. Because the furthest walk distance is 10m, it would not be suitable for individuals with minor impairments. In one study, 17% (42/249) of individuals had a score of 20 (i.e. ceiling effect) (Morganti et al. 2005). Comparisons with timed tests (e.g. 6 Minute Walk Test, 10 Meter Walk Test) indicated that the WISCI II is not as responsive. Morganti et al. (2005) and van Hedel et al. (2005) suggest walking speed data would improve responsiveness and decrease the ceiling effect. Interpretability: No normative data or cut scores are available but the WISCI II is gaining popularity and comparisons can be made with existing studies. Scores are self evident. Acceptability: The WISCI levels are relevant to individuals with SCI. There is no additional burden is as the test falls into typical clinical practice parameters. Feasibility: Equipment required is typically available in the clinical setting and includes: 5 meter parallel bars and walking devices (e.g. braces, cane, walker). Administration time is client dependent. Special training beyond knowledge of ambulation is not required. Scoring definitions provided are clear. Information regarding specific instructions (e.g. practice attempts) is lacking. Copies of WISCI I & II are in the Ditunno et al. 2000 and Ditunno & Ditunno 2001 papers. Clinical Summary: The WISCI II is a SCI specific measure developed to assess functional walking capacity, including the amount of physical assistance and/or braces required. It would be a useful to incorporate the WISCI II in clinical practice and to evaluate new SCI therapies. Additional tests may be necessary to assess endurance (e.g. 6MWT) and/or walking speed (eg.10MWT), especially for individuals with greater walking capacity. Psychometric Summary
Validity Responsiveness WISCI I Rigor Results Rigor Results Rigor Results Floor/ceiling +++ Inter O +++ +++ Construct +++ +++ Criterion ++ WISCI II +++ Inter O +++ +++ Construct +++ ++ ++ ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver; varied (re. floor/ceiling effects; mixed results). Note: for the tables the Morganti paper used the WISCI II, but results were classified as WISCI I. Reliability

25-74

25.3.1 Mobility 25.3.1.19 Wheelchair Circuit (WC) The WC assesses manual wheelchair mobility (i.e. skill and performance). This test was developed to overcome limitations in existing observational tests such as the Functional Independence Measure which assess wheelchair mobility but do not provide information on physical strain and are not able to detect change (Kilkens et al. 2002). Other wheelchair tests have limitations such as not being clinically feasible or are not comprehensive enough to assess functional wheelchair skills. The WC was adapted based on tasks from existing measures (Janssen et al. 1996; Harvey et al. 1998; Dallmeijer et al. 1999). It consists of 8 tasks and 3 aspects of mobility: 1) tempo; 2) technical skill; and 3) physical capacity. Tasks assessing tempo include figure-of-8 shape and sprint; tasks assessing skill include crossing a doorstep, mounting a platform, and transferring; and tasks assessing physical capacity include wheelchair driving and ascending slopes. An original an item on walking has been removed. Procedure: Three scores can be obtained from this performance based test including: 1) Ability score (primary score of the measure) provides information about the ability of the individual to perform each of the 8 test items within the allotted time. Assigned scores range from 1 (anchor such as individual can perform the task) to 0 (anchor if not). Three items also can receive a partial (i.e. point) score. Total scores range from 0-8 on an ordinal scale. 2) Performance time score is the sum of the performance times on the figure-of-8 and the 15 m sprint. Scores are reported in seconds. 3) Physical strain score consists of the strain experience in performing the 3% and 6% slope items. Scores are reported as either the mean peak heart rate (beats/min) reached for the 2 tasks or as mean the peak heart rates reached during the 2 slope items (% heart rate reserve). Advantages: The WC includes functional tasks developed specifically for the SCI population. It was designed and tested on individuals with ASIA A-D and individuals with tetra and paraplegia. Limitations: To date, this test has been primarily used in in-patient rehab settings in the Netherlands for research (Kilkens et al. 2002; 2004). The tasks are only relevant to manual wheelchair users. The ability and performance time score could be obtained in the clinical setting if the equipment is available but the strain score requires a formula using HR values. Interpretability: No normative data is available however the results can be compared to published data. Separate scores for ability (ordinal scale); performance time (seconds); and physical strain (formula using HR data) are calculated. The performance time and physical strain are useful to monitor progress once the individual achieves a maximal score on the ability score or if they have not demonstrated any change over repeated administrations. Acceptability: Some tasks may be too difficult / not suitable if individuals have medical complications or are older. Meaningfulness of time taken is questionable. Practice test is recommended. Feasibility: Space and equipment are required for the WC and include: an adjustable mat; treadmill (with 3% and 6% grade); HR monitor; stop watch; 0.10 m platform on floor; wood doorstep height 0.4 m; open space; and 15 m corridor. There was no mention of time required to administer the test. Clinicians require specialized training to perform exercise testing. A copy of the tool is available in the Kilkens et al. 2004 article. Clinical Summary: The WC is a promising test for individuals with SCI as preliminary results support its validity, reliability and responsiveness. It is primarily useful as a research measure and the equipment required for exercise testing may limit its usefulness in the clinical setting. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ Inter O +++ ++ Construct ++ ++ +++ ++** ++ Intra O +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IntraO=intraobserver; InterO=interobserver; varied (re. floor/ceiling effects; mixed results).

25-75

25.3.1 Mobility 25.3.1.20 Wheelchair Skills Test The Wheelchair Skills Test (WST) is a comprehensive measure used to objectively evaluate manual wheelchair skills (Kirby et al. 2002). Existing wheelchair tests (Harvey et al. 1998) do not include the level of wheelchair skills required for daily functioning. Version 1.0 of the WST includes 33 skills of varying difficulty (e.g. using the brakes, performing a wheelie) and the revised WST 2.4 (Kirby et al. 2004) includes 50 skills in 10 areas (brakes, armrests, footrests, rolling, turning, reaching, transfers, fold/open, obstacles, and wheelie). The individual is required to use a manual wheelchair and two attempts, with a rest, are permitted to complete the task. Procedure: Scoring is on a pass-fail basis (pass=1, fail=0, N/A=not applicable) with an additional goal attainment score (GAS), for which the clinician indicates whether or not the skill is a reasonable goal for the individual case (N/G=not a goal). The following scores are reported: 1) total score, 2) total percentage (total score/total score possible [excluding N/A items] * 100), 3) asymmetry ratio (L:R) for skills with L and R scores, and 4) GAS ((total score #N/G)/(total score possible #N/G) * 100). Advantages: The tasks cover a wide range of difficulty while remaining functional. It is a generic tool that can be used for several populations (e.g. SCI, amputees, stroke, musculoskeletal disorders, able-bodied) and it was developed using both inpatient and community dwelling samples. Limitations: To date, there has been insufficient testing with SCI populations (n=34) and more extensive research in community and long-term care settings is advisable. Interpretability: The total WST score for individuals with SCI was 68.4+15.1%, indicating that these individuals were able to complete approximately 70% of the tasks deemed suitable (Kirby et al. 2004). Since the WST is still being piloted and revised it is difficult to compare results and another version of the test is expected (i.e. WST 3.0). Acceptability: Although no adverse events occurred during testing and feedback was mainly positive, frustrations were noted for certain tasks. Clinicians rated the usefulness of the tool as 56.225.0% (range 2-93%), in which 0=not useful at all and 100=extremely useful. Translation into French version is in progress. Feasibility: The WST 2.4 was designed to require a minimal amount of equipment, set-up time and space. On average, it took 27.0+9.3mins (range 1270mins) to complete and therefore, it can be conducted in one session. The clinician requires test familiarization and a spotter is mandatory. The user manual and tool is available in pdf format on line at http://www.wheelchairskillsprogram.ca. Clinical Summary: The WST is a promising new measure to assess manual wheelchair mobility that can be used in both the clinical and research setting. Information on responsiveness is required before it should be used to evaluate interventions. Based on patient and clinician feedback, there likely will be content changes and version WST 3.0 is expected in the near future. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling WST 2.4 WST 2.4 N/A N/A WST 2.4 TR +++ ++ Construct +++ ++ Inter O +++ Intra O +++ ++ Criterion ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; Inter O=interobserver; Intra O=intraobserver; varied (re. floor/ceiling effects; mixed results). Rigor ++

25-76

25.3.2 Self-Care 25.3.2.1 The Barthel Index The 10 item Barthel Index (BI) is one of the oldest developed measures of activities of daily living (ADL). It was developed to assess the severity of disability or independence in personal care and mobility in stroke patients (Mahoney & Barthel 1965). Scoring of the 10 items reflects the burden on nursing care and social acceptability of the activity and are weighted to give a maximum score of 100 (Mahoney & Barthel 1965).
Item Bathing Grooming Feeding Dressing Toilet use Ascend/descend stairs Bowel management Bladder management Bed/wheelchair transfer Mobility (level surface) Scoring 0=dependent; 5=independent 0=dependent; 5=needs help; 10=independent

0=dependent; 5=occasional accident; 10=independent 0=unable, 5=major help needed; 10= minor help; 15=independent 0=unable; 5=wheelchair >50yards; 10=walks >50 yards; 15=independent

Procedure: Scores are obtained using direct observation, self-report, or responses from family or friends. Scores based on information from the past 24-48 hours preferred. Total scores are calculated by adding the items 0 (dependence) to 100 (independence). Advantages: One of the best researched ADL tools. It has been used with a number of diagnoses including: amputation, burns, cardiac problems, stroke and MS. Use of adaptive aids are permitted with a score of independent. Limitations: While research on responsiveness has been done for other populations only the modified BI has published properties for the SCI population. Floor (tetraplegics) and ceiling (paraplegics) effects makes the scale less useful for the SCI population. Interpretability: Cut scores to categorize dependency of patients have been established on the stroke population and are not necessarily representative for the SCI population. These scores range from 0 (dependence) to 100 (independence). Scores of 0-20 indicate total dependence; 21-60 as severe dependence; 61-90 moderate dependence and 91-99 slight dependence (Granger et al. 1977; 1979). Acceptability: Minimum patient burden unless the entire is scored by observation. Several modified versions exist including a 15 item (Granger et al. 1979) and a 17 item version (McGinnis et al. 1986) designed to increase the sensitivity. The BI exists in English, Japanese and a Turkish which has been assessed on the SCI population (Kucukdeveci et al. 2000). Only the 10 item English version has been assessed for the SCI population. Items are deemed important to society but may not reflect activities that are of importance to individuals with SCI. Feasibility: The BI requires 2-10 minutes to complete (more if by observation) and it is easy to score. No specific equipment or training is required although clinical experience and practice will benefit the user. The scale is public domain. An online version of the BI can be obtained at: http://www.strokecenter.org/trials/scales/barthel.pdf#search=%22barthel%20index%22. Clinical Summary: The BI covers very basic functional abilities and while a score of 100 suggests independence assistance may still be required with other higher order tasks such as cooking and cleaning and therefore other measures would be needed to assess these areas. The floor and ceiling effects suggest that the sensitivity to detect subtle but important changes for individuals with very high and low lesion levels may not be good. Therefore the BI may provide valuable descriptive level. The BI is not a clinically useful tool for clients with SCI. Psychometric Summary
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling IC +++ +++ Criterion +++ ++ +++ Floor ++ TR +++ ++ Construct ++ Ceiling + Inter O ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency; Inter O=interobserver Rigor ++

25-77

25.3.2 Self-Care 25.3.2.2 Frenchay Activities Index (FAI) The Frenchay Activities Index (FAI) assesses the patients frequency of doing Instrumental Activities of Daily Living (IADL) over the recent past (Holbrook & Skilbeck 1983). The index includes 15 items and reflects the patients behaviour in the areas of domestic chores, leisure/work., and outdoor activities (Holbrook & Skilbeck 1983). Responses measure the frequency of engaging in an activity on a 4-point ordinal scale. Total score ranges from 0 (no activity) to 45 (most frequently doing the activities) (Hsieh et al. 2007). A revised 13-item FAI* has recently been assessed among SCI patients. The following summary therefore focuses on the revised FAI. Procedure: Self administered or Interview format using a 2 and 3 point ordinal scale. The revised FAI includes 13 items: washing up; preparing main meals; washing clothes; driving car/bus travel; light housework; heavy housework; local shopping; social occasions; actively pursuing hobby; gainful work; travel outings/car rides; gardening; and household/car maintenance (two items in the original FAI, reading books and walking outside or going outside, misfit and were therefore taken out). 4 items (washing up, washing clothes, driving a car/bus travel, and gainful work) are scored on a 2 point scale, and the remaining 9 items are scored on a 3-point scale. The response categories are 0 = never, 1= occasionally or more, and 2 = most days. The total score ranges from 0 to 22. Advantages: The revised 13-item scale is brief, quick to complete and reflects the everyday activities of normal living (Holbrook & Skilbeck 1983). The revised FAI shows potential for assessment of IADL in SCI patients (Hsieh et al. 2007). Limitations: The FAI does not assess whether patients can perform IADL. Only one study by Hsieh et al. (2007), has examined the validity of the revised FAI. Generalization from this study may be limited by cultural or environmental contexts (Hsieh et al. 2007). More studies are needed to examine other measurement properties of the revised FAI in SCI patients. Interpretability: Higher scores indicate greater frequency of doing IADL. The raw scores of the 13-item FAI can be transformed to interval scores thereby enabling clinicians and researchers to quantify and monitor IADL function in SCI patients (Hsieh et al. 2007). Acceptability: Following a Rasch analysis, the 13 item revised FAI was developed specifically for use with SCI patients. The FAI is available in English and the revised FAI study was conducted in Mandarin. Feasibility: Minimal professional time and training is required. The index can be complete in between 5 and 15 minutes. A copy of the index can be downloaded from: http://www.medicine.mcgill.ca/strokengine-assess/PDF/FAIscale.doc Clinical Summary: The interval scale resulting from the transformed score of the revised FAI will allow clinicians and researchers to quantify improvements over time and differences between SCI patients. This will assist to obtain a more accurate reflection of disease impact, functional recovery, and treatment effects in patients (Hsieh et al. 2007). Psychometric Summary
Reliability Rigor Results ++ Reliability Coefficient ++ Validity Rigor ++ Results Construct** ++ Responsiveness Rigor Results + Floor/ceiling Floor ++***

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information * The revised FAI is a 13-item index that was formed by deleting 2 items that did not meet the Rasch model expectations. ** This assessment is based on Rasch analysis and the authors finding that the results assess a single, unidimensional IADL for SCI patients living in the community. *** 9.9% of the patients had the minimum and no patient had the maximum score.

25-78

25.3.2 Self-Care 25.3.2.3 Functional Independence Measure (FIM) The Functional Independence Measure (FIM) was developed in 1983 as part of the Uniform Data System for Medical Rehabilitation for the assessment of burden of care and functional impairment (Granger et al. 1986). Consensus for the items was arrived by a national advisory committee (McDowell & Newell 1996). The FIM assesses physical and cognitive disability. It consists of 18 items with two subscales; motor and socio-cognitive. The motor subscale includes 13 items: eating, grooming bathing, dressing upper extremity, dressing lower extremity, bowel management, bladder management, transfers to bed, chair or wheelchair, transfer to tub, toilet and shower, walking or wheelchair propulsion and stair climbing. The socio-cognitive subscale includes 5 items: comprehension, expression, social interaction, problem solving and memory. Each item is scored on a 7 point ordinal scale ranging from 1 (total dependence) to a score of 7 (total independence). The scoring considers the use of adaptive equipment and/or the extent of personal assistance or supervision required to complete the task. Procedure: The tool is completed by trained health professionals who observe patient performance. FIM Motor, cognitive and/or total scores can be derived by summing items. Advantages: The FIM is internationally known/accepted measure that has been used for clinical and research purposes. Substantial evidence supports its use. Reliability and validity are well established (Dodds et al. 1993; Hamilton et al. 1994). Motor scores reflect the functional status of individuals with spinal cord injuries (SCI) (Hall et al. 1999). It predicts the amount of assistance needed indicating the cost of living in the community with SCI (Hamilton et al. 1999). Five additional mobility and locomotor (5AML) items have recently been assessed with the SCI population. These 5 items are to be used in conjunction with the FIM to enhance sensitivity and better reflect relevant functional improvements with rehabilitation (Middleton et al. 2006). Limitations: The FIM is not SCI specific. It has limitations in sensitivity to component abilities within tasks for people with SCI. The FIM is not able to discriminate between the subtle, yet important changes in functional skills between paraplegics and tetraplegics (Dodds et al. 1993). There is a ceiling effect with the socio-cognitive subscale for individuals with SCI (Davidoff et al. 1990) and it does not measure the social, psychological or vocational impact of disability (Dodds et al. 1993) or the quality of life or patient satisfaction of living with SCI. Interpretability: Total FIM scores range from 18 (totally dependent) to 126 (totally independent) motor scores range from 13 (total dependence) to 91 (total independence) and cognitive scores range from 5 (total dependence) to 35 (total independence). Higher scores reflect fewer care hours required upon discharge (Heinemann et al. 1997; Hamilton et al. 1999). The FIM motor score is a better predictor of discharge functional ability than the cognitive score with a SCI population (Graves 2005). Individuals with a diagnosis of ASIA A or B upon admission, have the most change in Motor scores from admission to discharge. Total scores are misleading for SCI due to ceiling effects of the cognitive subscale (Hall et al. 1999). Acceptability: Requires approximately 45 minutes to complete. The items are not necessarily SCI specific. It has been translated into 10 languages (Ottenbacher et al. 1996). There is a WeeFIM exists for children (McCabe et al. 1990). Short and phone versions also exist. Feasibility: Certification for FIM administration is required. Information on training can be obtained from http://www.udsmr.org/. See McDowell & Newell (1996) for a copy of the FIM. Clinical Summary: The FIM is often considered the gold standard for assessing activities of daily living. It is routinely used to collect data for administrative purposes in databases such as the Canadian Institute for Health Information National Rehabilitation Reporting System and the Uniform Data Set for Medical Rehabilitation. It is the best researched measure of function but it is not thorough in its evaluation and is not sensitive to the subtle important changes in function 25-79

25.3.2 Self-Care for SCI individuals. The cognitive subscale should only be used as a screen due to ceiling effects. Despite its limitations, the FIM, has well established psychometric properties and is accepted by fee users as a predictor of function and potential care hours required for discharge. Psychometric Summary:
Reliability Rigor Results +++ IC ++ TR +++ Inter O +++ ++ IC ++ Rigor +++ FIM Validity Results Construct +++*** Criterion +++ 5AML Construct ++ Rigor +++ Responsiveness Results Floor/ceiling + Floor* ++, + Ceiling* +, ++ +

Floor** Ceiling** Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency *Hall et al. (1999) reports poor floor scores on motor scales with high tetraplegics; Hall et al. (1999) reports adequate floor /ceiling scores on motor scales with low tetraplegics. **Middleton et al. (2006) reports ceiling effects for 3 of the 5 items for the paraplegic group, and 1 floor effect for the tetraplegic group. *** Dittunno et al. (2007, 2008) reports validity specifically for the FIM locomotor score

++

25-80

25.3.2 Self-Care 25.3.2.4 Functional Independence Measure Self-Report (FIM-SR) This FIM-SR, similar to the FIM, assesses burden of care and functional impairment. The original FIM is completed by trained clinicians whereas the FIM-SR is completed by the patient. The FIM-SR, contains 6 scales, including, self-care, sphincter control, mobility, locomotion, communication, and social cognition (Masedo et al. 2005). Procedure: The FIM Self Report was developed for administration by telephone interview. The scores can be reported as FIM Motor scores, FIM Cognitive scores or FIM Total summed scores. The 18 items comprising the scales are rated on a 1 7 scale where 1 = total assistance is needed and 7 = you are completely independent. Total FIM-SR scores range from 18 to 126. Advantages: The instrument reports the patient perspective on their level of independence. The motor scale adequately discriminated subjects with different injury levels (Masedo et al. 2005). The FIM-SR makes follow up post discharge more feasible for clinical use. Limitations: The FIM-SR reports perceived functional independence. The FIM cognitive subscales have restricted range for application and ceiling effects for individuals with SCI (Masedo et al. 2005). Interpretability: The FIM-SR total summed scores range from 18 (total dependence) to 126 (total independence). The FIM Motor scores range from 13 (total dependence) to 91 (total independence). The FIM Cognitive scores range from 5 (total dependence) to 35 (total independence). The higher the FIM score, the fewer care hours required upon discharge (Hamilton et al. 1999; Heinemann et al. 1997). The FIM Motor score is a better predictor of discharge functional abilities than the FIM Cognitive score with a SCI population (Graves 2005). Individuals with a diagnosis of ASIA A or B upon admission, have the most change in FIM Motor scores from admission to discharge. The FIM Total summed score is misleading to use for the SCI population due to the ceiling effect of the cognitive subscale (Hall et al. 1999). Acceptability: Most items on the FIM-SR generalize to all populations however modified versions of the FIM exist to accommodate the needs of individuals with SCI (see FIM-Modified). The FIM-SR has less clinician and client burden than the original FIM which requires observation of tasks. Feasibility: Health care professionals scoring the FIMSR are required to complete training and testing protocol. The FIMSR is very short and requires minimal time to complete. Contact Mark P. Jensen, PhD, Department of Rehabilitation Medicine, University of Washington Medical School, for inquiries to obtain the FIM-SF. Clinical Summary: In general, the FIM is well known as the internationally accepted, global tool to measure functional independence. It is the assessment with which every other functional assessment measures itself to as the gold standard. It is a good generic indicator of disability however it was not developed specifically for individuals with SCI and has limited application to this population. The FIM-SR is quick and easy to complete, and the motor scale and the total score are reliable measures of perceived function in individuals with SCI. Psychometric Summary
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling IC+++ + Convergent + + + Ceiling TR+++ (Cognitive scale) Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency Rigor ++

25-81

25.3.2 Self-Care 25.3.2.5 Klein-Bell Activities of Daily Living Scale (K-B Scale) The Klein-Bell ADL Scale (K-B Scale) is a generic instrument that can be used with persons with or without disability. It was developed to measure activities of daily living (ADL) independence in both adults and children. As a result of the task analysis performed to determine the critical and observable subtasks, 170 items were identified. These items are divided into six sub-dimensions: Mobility, Emergency Communication, Dressing, Elimination, Bathing/Hygiene, and Eating. The majority of items (162) measure ADL whereas eight items measure body function (bladder and bowel emptying, bladder and bowel incontinence, chewing and swallowing food, swallowing liquids, verbalizing telephone messages). Procedure: Each subtask on this performance oriented measure is scored as able to perform, unable to perform, or not applicable. Subtask weights of 1, 2, or 3 are assigned to each subtask. In developing the weights, four factors were considers, including: importance to health, difficulty for non-disabled persons, time required to perform the task, and the burden of caregiving. Adding the points from each domain results in an overall independence score. This score ranges from 0 to 313, and are expressed as percentages of the total points. Advantages: The K-B Scale can be used to assess basic ADL in cervical SCI patients as it can identify differences between cervical SCI patients ability from less to greater independence in ADL (Dahlgren et al. 2007). Limitations: Five items, bladder and bowel incontinence, chewing and swallowing food, and swallowing liquids, showed ceiling effects among cervical SCI patients (Dahlgren et al. 2004). K-B Scales reliability in conjunction with arm and grip function in patients with cervical SCI has yet to be proven (Dahlgren et al. 2004). The scale was not designed specifically for SCI subjects, therefore, items included in the scale may not be important for SCI populations. Interpretability: Overall independence scores can range from 0 to 313, or from 0% to 100%. Higher scores indicate greater independence. Acceptability: The K-B Scale divides each activity into its essential components to get a measure of basic ADL. This is advantageous over other known ADL scales as it makes it possible to detect problematic items within activities and thus helps to better identify rehabilitation treatment. Swedish and pediatric versions exist. Feasibility: The Klein Bell can take between 1-3 hours to administer and scoring can take up to 15 minutes. Copies and a manual can be obtained from center@u.washington.edu. Manual should be read before administering the scale (30 minutes) as it provides explicit directions about each item and scoring. Clinical Summary: The Klein-Bell is a comprehensive ADL scale has been demonstrated to be a useful clinical tool for the assessment of the efficacy of rehabilitation in adults and in children (Lynch & Bridle 1989). Others have used this to determine outcomes post reconstructive hand surgery in cervical SCI patients (Dahlgren et al. 2004). The time taken to administer the scale may be a determinant to clinicians. The authors suggest using the scale as a method to generate discussion about goals they wish to achieve. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IO +++ ++ Construct +++ + + Ceiling + Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IO=Inter observer

25-82

25.3.2 Self-Care 25.3.2.6 Lawton Instrumental Activities of Daily Living scale (IADL) The 8 item instrumental activities of daily living(IADL) scale was developed to assess the complex activities of daily living (ADL) necessary for older adults living in the community (Lawton & Brody, 1969). It assesses a persons ability to perform tasks such as using a telephone, doing laundry, and handling finances. Each ability measured by the scale relies on either cognitive or physical function, though all require some degree of both. Responses to each of the eight items in the scale will vary ranging from independence in performing the activity to not performing the activity at all (Graf 2008). Procedure: The scale can be administered with a written questionnaire or by interview. The patient or a knowledgeable family member or caregiver may provide answers (Graf 2008). Response options for each of the items varies, however, in general responses range from 0 unable or partially able to 1 able (Graf 2008). Alternatively the level of independence can be reflected using a three point scale; 0=unable, 1=needs assistance or 2=independent (Andresen et al, 1999). Advantages: The IADL is an easy to administer and provides various response options for each item enabling flexibility when scoring. It measures more complex (instrumental) levels of functioning than other ADL instruments. The IADL scale is therefore likely to be more sensitive in detecting earlier, less severe dysfunction (Graf 2008). Limitations: The content of IADL measures often reflects specific cultural concerns. For example, British measures frequently include the ability to make a cup of tea (Graf 2008). There is also potential for gender bias as the scale may overemphasize tasks customarily performed by women and thus overestimate dependency in men. Another limitation is the self-report or surrogate report method of administration rather than a demonstration of the functional task. This may lead either to over-estimation or under-estimation of ability. The instrument may not be sensitive to small, incremental changes in function. Only one study, with findings of weak construct validity, has been performed to test the IADL psychometric properties among a SCI population (Andresen et al, 1999). Interpretability: Depending on the goal of the assessment and how the information will be used, the instrument can be scored in several ways. Data for the SCI population was scored using the three point scale. Item responses are summed to derive a scale score with higher scores indicating great independence. Acceptability: Items were originally derived for older adults and not the SCI population however the activities are relatively common and necessary for community living. Additional items reflecting the SCI experience may enhance the scale utility. Feasibility: Andresen et al (1999) reported that the time to complete was just over one minute. A copy of the instrument is available in the article by Graf (2008). A free online video demonstrating use of this assessment is also available at http://links.lww.com/A246. Clinical Summary: The IADL scale is one of the oldest and most recognized tools when assessing instrumental ADLs. for identifying how a person is functioning at the present time, and to identify improvement or deterioration over time. Psychometric Summary
Reliability Rigor Results N/A N/A Validity Rigor + Results Construct + Responsiveness Rigor Results ++ N/A Floor/ceiling +++

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-83

25.3.2 Self-Care 25.3.2.7 Physical Activity Scale for Individuals with Physical Disabilities (PASIPD) The PASIPD is a modified version of the 10 item Physical Activity Scale for the Elderly (PASE) (Washburn et al, 1993). The PASIPD has 13 items which captures information about leisure (n=6 items), household (n=6 items), and work related (n= 1 item) physical activity over the preceding 7 days (Washburn et al. 2002). The PASIPD was developed targeting individuals with visual/auditory and locomotor/SCI disabilities. It solicits information about the frequency (number of days a week) and duration (daily hours) of current participation in all of the 13 items. The specific activity performed in each of these areas is also captured. The PASIPD assesses 5 distinct dimensions of physical activity: home repair, lawn and garden work, housework, vigorous sport and recreation, moderate sport and recreation, and occupation and transportation. Procedure: Survey administered by mail, telephone, or in person. Individuals respond to 2 ordinally ranked responses. Frequency responses range from 1=never to 4=Often while duration responses range from 1=less than 1 hour to 4=greater than 4 hours. Advantages: PASIPD is based on the popular PASE scale which has received broad acceptance. It has the potential to provide in-depth information about the degree of activity in the form of Metabolic Equivalents (METS hr/day) and or descriptive information about various activities individuals are performing as well as the frequency and duration of this activity. Has utility for survey based research. Some normative values are available in the original paper (Washburn et al, 2002). Limitations: The total score, which is a composite of the 5 subcategory scores, may not always provide the most useful measure of activity (Washburn et al. 2002). For example, it may not help researchers who are trying to determine which factors are associated with specific dimensions of activity, and it may not be useful for comparing activity levels between population subgroups or for assessing the association of physical activity with health outcomes. Further work is needed to establish the validity of the PASIPD in samples of lower education and income and with more diverse types of physical disabilities. Responses are categorized into large ranges (eg/2-4 hours) and may be limited by memory. Interpretability: The average hours per day for each item is multiplied by a MET value associated with the intensity of the activity and summing over items 2 through 13 (Washburn et al. 2002). Scores range from 0 (no activity) to >100 METS hr/day (very high). Potential for floor effects but ceiling effects should not be an issue. Acceptability: Items were developed with disabled population in mind. Administration is easy, taking approximately 15 minutes. Scoring can be complicated. Available only in English. Feasibility: The brevity of the survey makes it feasible for inclusion in large-scale studies in which limited time and resources may be available for physical activity assessment. (Washburn et al. 2002) A copy of the PASIPD instrument and its scoring instructions can be accessed by obtaining the paper by Washburn et al. 2002. Clinical Summary: This tool may provide some useful information for clinicians but is more likely of value to researchers. Psychometric Summary
Reliability Rigor Results + IC + Floor/ceiling + (Floor) +++ (Ceiling) Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency Validity Rigor ++ Results Construct ++ Responsiveness Rigor Results N/A N/A

25-84

25.3.2 Self-Care 25.3.2.8 Quadriplegia Index of Function (QIF) The QIF was developed in 1980 to provide a functional assessment that would be useful in documenting the small but clinically significant gains made by quadriplegics throughout inpatient rehabilitation (Gresham et al. 1986). This index is comprised of 10 areas including: transfers, grooming, bathing, feeding, dressing, wheelchair mobility, bed activities, bowel program, bladder program and understanding of personal care. The first 9 areas represent functional performance activities and the final area consists of a questionnaire designed to assess the clients understanding of skin care, nutrition, equipment medications and infections. The functional performance categories are scored on a 5 point scale from 0 (dependent) to 4 (independent). Procedure: Information is collected in an interview format. Scores are provided to give credit for being able to complete a portion of the task rather than the entire task. Each category of functional performance is calculated according to weighted scores. Functional performance categories: /180 Understanding of personal care: /20 Total: 200 /2 = /100 Advantages: The QIF was designed for SCI population, specifically for those individuals with tetraplegia. It measures improvement from admission to discharge for the in-patient rehabilitation population. Studies have shown that the ASIA motor scores are strongly correlated to performance improvement on QIF scores (Yavuz et al. 1998) and the scores are not dependent on age or length of stay in rehabilitation facility. Studies of the responsiveness or sensitivity to change indicate that the QIF reflects was better at detecting small gains in function than the Barthel Index or the Kenny Self-care Evaluation (Gresham et al. 1986). Limitations: The scoring criteria is highly specific due to the weighted calculations. Not all activities are relevant to all individuals and not all items are relevant or applicable to the inpatient rehabilitation setting. Given this it remains unclear how to score items that are not missed. There is some redundancy within the QIF. Interpretability: The scores represent functional performance in activities rather than performance in component parts. No information regarding interpretability of the scores (e.g.: norms or cut points) is provided. Acceptability: Tested on a total of 59 SCI subjects in two separate studies (Gresham et al. 1986; Yavuz et al. 1998). These studies reported good client co-operation and lack of expressed concern by the raters. Feasibility: Takes less than 30 minutes to administer when the assessor is familiar with the measure. It is easy to administer, requiring no special equipment or training. It is difficult to score due to the weighted scale of the functional performance activities. Copies of the scale and scoring instructions are available by contacting the authors of the Gresham et al. (1986) article. Clinical Summary: The QIF is a functional measure designed specifically for clients with spinal cord injury. It is sensitive to change, representing small gains in functional performance, which is important for both clinicians and clients. It provides a meaningful assessment of participation of functional self-care activities. This tool would be particularly useful for evaluating change and assessing rehab effectiveness for the tetraplegic population. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling +++ Inter O ++ +++ Construct +++ + + N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver

25-85

25.3.2 Self-Care 25.3.2.9 Quadriplegia Index of Function (QIF) Short Form The Quadriplegia Index of Function (QIF) Short Form was developed to provide a sensitive global functional scale for measuring gains in individuals with tetraplegia during rehabilitation. It is comprised of 6 items: wash/dry hair, turn supine to side in bed, lower extremity dressing, open carton/jar, transfer from bed to wheelchair and lock wheelchair. The 6 items were selected from five of the functional performance categories of self-care and mobility on the QIF in order to reduce item redundancies of the 37-item version. Procedure: Information is collected in interview format. It is scored on a 5 point scale from 0 (dependent) to 4 (independent). Advantages: The QIF Short Form is more practical to use than the original QIF as the number of items have been consistently reduced. It was also tested on a large sample size (N=95, Marino et al. 1999). Item response theory was used to select the most important items and to verify the hierarchical nature of the tool. The psychometric properties are very good. Limitations: The instrument has not been assessed for sensitivity to change. Also, no differences were identified between subjects with C7 and C8 quadriplegia which implies the tool may not be able to distinguish between levels of SCI. Interpretability: Scores from the 6 items are summed and scores range from 0 to 24. Higher scores indicate greater independence in key ADLs. Ceiling effects may be plausible for individuals with lower level injuries. Acceptability: The QIF Short Form is designed specifically for SCI population. The reduction of items means less burden for both the clinician and patient. Feasibility: It is easy to calculate because there are no weighted scores, thereby simplifying the use of the QIF Short Form. No special training or equipment is required to administer the measure. To inquire about the QIF Short Form, address correspondence to RJ Marino, MD, Department of Rehabilitation Medicine, The Mount Sinai School of Medicine, 1425 Madison Ave, Box 1240, New York, NY 10029, USA Clinical Summary: The QIF is a functional measure designed specifically for clients with spinal cord injury. It is not a comprehensive measure of upper extremity function or predictor of independence in ADLs upon discharge. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Criterion +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-86

25.3.2 Self-Care 25.3.2.10 Self Care Assessment Tool (SCAT) The Self Care Assessment Tool (SCAT) was developed by experienced clinicians to assess cognitive and functional skills required by individuals with an SCI below C7 to perform self-care (McFarland et al. 1992). C7 and below was selected because the individuals have the required skills to perform self-care activities. When this article was published, none of the existing measures were pertinent to the specific needs of individuals with SCI. It contains 81 items: 41 cognitive and 40 functional. Cognitive and functional skills are measured in eight self-care areas: bathing/grooming; nutritional management; medications; mobility/transfers/safety; skin management; bladder management; and bowel management. For each area the clinician assesses the cognitive and functional skills. The items in the SCAT consider the use of physical assistance as well as assistive devices. The scale for each item is yes/no/not applicable. Procedure: The SCAT is an interviewer administered test. A cognitive and a functional subscale score can be calculated as well as an overall score, although no details are provided on how to calculate the scores. Advantages: The SCAT was developed specifically for the SCI patient population whereas many self-care measures such as FIM have been developed for a broad range of health conditions. It assesses both cognitive and functional skill, which may be important as the incidence of SCI increases in older individuals. The items assess performance rather than what they are capable of doing. It has been used in both the rehabilitation and community setting. Some preliminary results indicate that results at 6 weeks prior to discharge from rehabilitation can predict self care performance at 6 months post discharge (McFarland et al. 1992). Limitations: The SCAT is designed for individuals with SCI below C7 and it is likely that high functioning individuals with thoracic and lumbar lesions may obtain a ceiling effect, but this needs to be confirmed in future research studies. The ordinal scale may not make the test suitable for assessing change. Since publication of the SCAT in 1992, the SCIM is now commonly used to assess self care for individuals with SCI and it would be important to compare these tests in future studies (McFarland et al. 1992). Interpretability: The SCAT provides information on the functional and cognitive skills required to perform self-care. The SCAT does not appear to be widely used in either the clinical setting or in research. No standardized norms are available and no results were reported so it is difficult to make any comparisons. Acceptability: The content of the SCAT appears to be clinically relevant based on the sample questions provided in the article. The test is designed for individuals with SCI lesion below C7. Feasibility: There is no information is available on the time it takes to complete the SCAT. However, considering it contains 81 items, it may not be feasible to administer in the clinical setting. It does not require special training and the test developers produced a manual. For a copy of the tool contact the authors of the McFarland et al. (1992) article. Clinical Summary: The SCAT was designed to assess the cognitive and functional skills required to perform self-care for individuals with a motor level below C7. It is relevant for individuals who require assistance or devices for self-care but more information is required to determine if it would be feasible to use it in the clinical setting. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR ++* ++ Predictive +++** N/A N/A N/A Inter O +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; Inter O=interobserver * TR was assessed using Pearson correlation coefficients ** Validity was predictive validity (construct as no gold standard exists) and it was assessed by comparing predischarge score with 6 months post discharge score. Rigor ++

25-87

25.3.2 Self-Care 25.3.2.11 Skin Management Needs Assessment Checklist (SMNAC) The Skin Management Needs Assessment Checklist (SMNAC) (Berry et al. 2004) was extracted from the Needs Assessment Checklist (Kennedy & Hamilton 1999), and was developed as a post discharge measure to assess client knowledge and ability to perform skin checks, pressure relief and prevention of skin breakdown. It is based on the individuals perception his/her ability to independently perform skin management activities. The checklist was developed in accordance with Treatment Theory (identifying the need for assessments that measure the processes between input and output, define issues for specific populations and outline the required step to produce the expected outcome (Keith & Lipsey 1993). Each item on the SMNAC receives a score ranging from 0-3 (0-complete dependence; 1-mostly dependent; 2-moderately dependent; 3-complete independence) or N/A (not applicable, representing no rehabilitation need or goal to be identified). Procedure: The self-report measure requires individuals to demonstrate or, for an individual with a high lesion, instruct their personal care attendant to perform the activities. The items are summed to generate a total score out of 36. The value reported is a proportion (client score/36). Higher scores reflect greater independence. Advantages: In addition to measuring physical and/or verbal independence, it considers specific attributes such as clients attitudinal and behavioural factors towards skin management. As a result, the SMNAC identifies the complex variables which impact an individuals actual performance in skin protection activities. The test includes a measure of verbal abilities for individuals with a high lesion SCI, enabling it to be sensitive to the subtle, yet significant gains for these individuals and encourages independence and control over skin protection activities. Data from the study suggest there is strong internal consistency ( = 0.85) and responsiveness. Limitations: Most raters tend to score in either category 0 or 3 leading to floor/ceiling effects. The ambiguity with the middle scores may reflect bias in interpreting or poorly defined categories for the other scores. There is limited research using this tool. Interpretability: No risk specific scores or normative data is available at this time. Acceptability: There is minimal patient burden however some embarrassment may be evident. Item wording and scoring options provided do not clearly correspond in all cases. This may lead to rater ambiguity for the middle response categories. For example, when asking Are you aware of the danger of zips, seams, calipers, etc? the response categories may cause the patient confusion, who may want to answer yes or no rather than rate their independence. Feasibility: It requires approximately 20 minutes to administer and score. No special equipment or training is required, however, experience with wound care may enhance tool use. A copy can be obtained from the author. Clinical Summary: The SMNAC provides SCI specific information related to skin management needs. The SMNAC score may be used to identify the problems for individuals living in the community to establish priorities and goal setting or to inform community health care professionals about a clients ability to manage skin management activities. In addition, the tool could be used preventatively at discharge, to identify individuals at risk for skin breakdown, enabling education prior to discharge. Additional research, particularly responsive and validity in general, is necessary before recommending the use of the SMNAC to evaluate the effectiveness of interventions targeting maintenance of skin integrity. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ SS + ++ + N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; SS=sensitivity/specificity

25-88

25.3.2 Self-Care 25.3.2.6 Spinal Cord Injury Lifestyle Scale (SCILS) The 25 item Spinal Cord Injury Lifestyle Scale (SCILS) is a self-report measure of the frequency of health-related behaviour performance in individuals with spinal cord injury (SCI). The tool was designed to enable examination of the effectiveness of clinical and educational efforts for health maintenance and prevention of secondary impairments (Pruitt et al. 1998). The items were developed from a review of the literature on secondary impairments related to SCI. In addition, expert clinicians (physician assistants, nurses and physiotherapists) generated items describing health related behaviours. Each item describes different health behaviours. The 5 subscales include: cardiovascular (4 items), genitourinary (4 items), neuromuscular (8 items), skin (6 items) and psychosocial (2 items). Its purpose is to evaluate the effectiveness of clinical and educational efforts for health maintenance and the prevention of secondary impairments following SCI. The frequency with which each behaviour has been performed over the past 3 months is rated using an ordinal scale where 4=almost always, 3=frequently, 2=sometimes, 1=rarely and 0=never. One item (genitourinary) is reverse scored. Procedure: Data can be collected by pen and paper or through interview if the individual is unable to write. A score is generated for each scale by totaling scores of each item using a 0-4 point scale. A total score is calculated by summing the 5 scale scores. Sub-scale scores may be used to identify/address specific areas of concern. Advantages: This is an SCI specific tool designed to address the concerns surrounding secondary conditions that they experience. Data from the study suggest that the SCILS has strong internal consistency (alpha=0.81) for the total score however the subsections range from alpha=.31 to .86 indicating some item revision may be useful (Pruitt et al. 1998). Limitations: Due to the nature of the small sample size (N=49) and the fact that the sample consisted of males only, the generalizability of the results is limited. Current research is for young adults (19-50 years old). Although the authors identified a comprehensive list of secondary impairments, only some of these impairments have been included in the tool. For example, items missed include autonomic dysreflexia, deep vein thrombosis, pressure relief in bed, adjustment to disability, to mention a few. The evidence did not identify an association between the SCILS and a decrease in secondary health impairments. The SCILS requires retrospective recall and personal diagnoses, which is not as accurate as a health record review or clinical assessment. Studies on responsiveness are not available. Interpretability: Higher total scores are intended to indicate better performance of behaviours which in turn promote health in individuals with SCI. The scores could be used for each subscale or as a tool for general overall health. There are no norms or reported cut scores. Acceptability: Individuals with SCI participated in item elimination during tool development therefore the included items should resonate with the population. Feasibility: Administration and scoring takes 10-15 minutes for each. The SCILS is not available in any other languages. A copy is available from the authors. Clinical Summary: The SCILS requires further testing and development of the measure before recommending it for clinical use. Specifically responsiveness studies are required if the tools is to be used to evaluate clinical or education interventions. At present there is no evidence to suggest that it is able to predict and therefore prevent secondary impairment. Studies of the utility of the SCILS with women and retest reliability are necessary. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Construct + N/A N/A N/A Concurrent + Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency Rigor ++ Rigor ++ Reliability Results IC ++

25-89

25.3.2 Self-Care 25.3.2.7 The Spinal Cord Independence Measure (SCIM) The SCIM is a new disability scale developed (Catz et al. 1997) that specifically addresses patients with spinal cord lesions (SCL) in order to describe their ability to accomplish activities of daily living. 3 versions of the SCIM (I-III) have been consecutively developed (Catz et al. 1997; 2001a; 2006). The SCIM scores 19 items in three subscales; 1) self-care (feeding, grooming, bathing, and dressing); 2) respiration and sphincter management and 3) mobility (bed and transfers and indoor/outdoor). The item scores are weighted related to the assumed clinical relevance. Procedure: Clinical staff scores the items based on the activities the patient is performing during the regular daily activities or as the patient reports in an interview. Scores are derived by adding up the items producing a total score (0 to 100) and/or subscale scores (self care 0-20; respiration and sphincter management 0-40; mobility 0-40). Higher scores reflect higher levels of independence. Advantages: This is an SCI specific measure of basic functional independence. Validity (face and construct) is supported by several studies including a recent multicentre (13 centers in 6 countries). The results suggest strong validity and reliability (Catz et al. 2006) and better sensitivity to change compared to the Functional Independence Measure (Catz et al. 1997). The SCIM is quickly becoming one of the best research tools within the SCI population (Catz et al. 1997; 2001a; 2001b; 2002; 2004; 2004; 2006; Grijalva et al. 2003; Itzkovich et al. 2002; 2003; 2006; Jackson et al. 2004; McKinley et al. 2001; Popovic et al. 2006; Ronen et al. 2004; Scivoletto et al. 2003; Morganti et al. 2005). The SCIM III, the most recent version, has been revised based on data from an international multicentre study using Rasch analysis, and incorporating comments from experts from several countries (Catz et al. 2007). The scores of each SCIM III subscale appear as a reliable and useful quantitative representation of a specific construct of independence after SCL. Limitations: The weighting of the items may require revision to account for the assumed clinical relevance. Interpretability: The scores have shown to be of clinical relevance and are able to monitor improvements of independence during rehabilitation and represent typical rehabilitation goals. The SCIM has been found to be more sensitive to chance in SCI rehabilitation than the FIM. Acceptability: The items reflect basic areas of patient concern. There is minimal patient burden. The multicentre study showed no difficulties related to languages. Feasibility: The SCIM takes 30-45 minutes conduct and score. Minimal additional staff burden is required as the variables collected are important to patient care. No special equipment is necessary however knowledge of areas of function is beneficial and experience using the test is likely an asset. A copy of the SCIM III can be obtained from the article by Catz et al. (2007). Clinical Summary: The SCIM has high clinical relevance for the rehabilitation for individuals with either traumatic/non-traumatic and complete/incomplete SCI. Research supporting the use of the tool is accumulating and the results suggest the SCIM is reliable and valid and may become the gold standard of basic function. Ceiling and floor effects (especially floor) may be an issue for individuals at either who have very high or low level lesions. Psychometric Summary:
Reliability Rigor ++ Results Inter O +++ Rigor ++ Validity SCIM Results Construct +++ Criterion +++ Rigor Responsiveness Results Floor/ceiling

25-90

25.3.2 Self-Care
SCIM II Construct +++ SCIM III Construct ++* Criterion +++

++ +++ +++ ++

IC ++ Inter O ++ IC +++ Inter O +++

+++

++

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; Inter O=interobserver; IC=Internal Consistency * Determined by a Rasch analysis

25-91

Activity References American Thoracic Society. ATS Statement: Guideline for the Six-Minute Walk Test. Am J Respir Crit Care Med 2002; 166: 111-117. Andrews AW, Thomas MW, Bohannon RW. Normative Values for Isometric Muscle Force Measurements Obtained With Hand-held Dynamometers. Physical Therapy 1996; 76:248259. Barker RN, Amsters DI, Kendall MD, Pershouse KJ, Haines TP. Reliability of the Clinical Outcome Variables Scale when administered via telephone to assess mobility in people with spinal cord injury. Arch Phys Med Rehabil 2007; 88: 632-7. Basta SM. Pressure Sore Prevention Self-Efficacy and Outcome Expectations: A Study of People with Spinal Cord Injury. Rehabilitation Nursing Research spring 1994: 11-17. Berry C, Kennedy P, Hindson L. Internal consistency and responsiveness of the skin management needs assessment checklist post spinal cord injury. J Spinal Cord Med 2004;27:63-71. Bovend Eerdt TJH, Dawes H, Johansen-Berg H, Wade DT. Evaluation of the Modified Jebsen Test of Hand Function and the University of Maryland Arm Questionnaire for Stroke. Clinical Rehabilitation 2004; 18: 195-202. Bowden MG, Behrman AL. Step Activity Monitor: Accuracy and test-retest reliability in persons with incomplete spinal cord injury. J Rehabil Res Dev 2007; 44: 355-362. Brogrdh C, Persson AL, Sjlund B. Intra- and inter-rater reliability of the Sollerman hand function test in patients with chronic stroke. Disability and Rehabilitation 2007; 29:145-154. Burns SP, Breuninger A, Kaplan C, Marin H. Hand-Held Dynamometry in Persons with Tetraplegia. Am. J. Phys. Med. Rehabil. 2005;84:22-29. Campbell J, Kendall M. Investigating the suitability of the Clinical Outcome Variables Scale (COVS) as a mobility outcome measure in spinal cord in jury rehabilitation. Physiother. Can 2003; 55: 135-144. Catz A, Itzkovich M, Agranov E, Ring H, Tamir A. SCIM--spinal cord independence measure: a new disability scale for patients with spinal cord lesions. Spinal Cord 1997;35:850-856. Catz A, Itzkovich M, Agranov E, Ring H, Tamir A. The spinal cord independence measure (SCIM): sensitivity to functional changes in subgroups of spinal cord lesion patients. Spinal Cord 2001a;39:97-100. Catz A, Itzkovich M, Steinberg F, Philo O, Ring H, Ronen J, Spasser R, Gepstein R, Tamir A. The Catz-Itzkovich SCIM: a revised version of the Spinal Cord Independence Measure. Disabil Rehabil 2001b;23:263-268. Catz A, Itzkovich M, Steinberg F, Philo O, Ring H, Ronen J, Spasser R, Gepstein R, Tamir A. Disability assessment by a single rater or a team: a comparative study with the CatzItzkovich spinal cord independence measure. J Rehabil Med 2002;34:226-230. Catz A, Goldin D, Fishel B, Ronen J, Bluvshtein V, Gelernter I. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine 2004;29:2278-2282. Catz A, Greenberg E, Itzkovich M, Bluvshtein V, Ronen J, Gelernter I. A new instrument for outcome assessment in rehabilitation medicine: Spinal cord injury ability realization measurement index. Arch Phys Med Rehabil 2004;85:399-404. Catz A, Itzkovich M, Tesio L, Biering-Srensen F, Weeks C, Laramee M, Craven BC, Tonack M, Hitzig SL, Glazer E, Zeilig G, Aito S, Scivoletto G, Mecci M, Chadwick RJ, El Masry WS, Osman A, Glass CA, Silva P, Soni BM, Gardner BP, Savic G, Bergstrom EM, Bluvshtein V, Ronen J. A multi-center International Study on the Spinal Cord Independence Measure, Version III: Rasch psychometric validation. Spinal Cord Resubmission requested 2006. Catz A, Itzkovich M, Tesio L, Biering-Sorensen F, Weeks C, Laramee MT, Craven BC, Tonack M, Hitzig SL, Glaser E, Zeilig G, Aito S, Scivoletto G, Mecci M, Chadwick RJ, El Masry WS, Osman A, Glass CA, Silva P, Soni BM, Gardner BP, Savic G, Bergstrom EM, Bluvshtein V, 25-92

Ronen J. A multicenter international study on the Spinal Cord Independence Measure, version III: Rasch psychometric validation. Spinal Cord 2007; 45: 275-291. Chafetz R, McDonald C, Mulcahey MJ, Betz R, Anderson C, Vogel L, Gaughan JP, Martin S, O'Dell MA, Flanagan A. Timed motor test for wheelchair users: initial development and application in children with spinal cord injury. J SCI Med 2004;27:S38-43. Chan SCC and Chan APS. The Validity and Applicability of the Chinese Version of the Quebec User Evaluation of Satisfaction With Assistive Technology for People With Spinal Cord Injury. Asst Technol. 2006;18:25-33. Dahlgren A, Karlsson A-K, Lundgren Nilsson , Fridn J, Claesson L. Activity performance and upper extremity function in cervical spinal cord injury patients according to the Klein-Bell ADL Scale. Spinal Cord 2007; 45: 475-484. Dallmeijer AJ, van der Woude LH, Hollander AP, van As HH. Physical performance during rehabilitation in persons with spinal cord injuries. Med Sci Sports Exerc 1999;31:1330-1335. Davidoff GN, Roth EJ, Haughton JS, Ardner MS. Cognitive dysfunction in spinal cord injury patients: sensitivity of the Functional Independence Measure subscales vs. neuropsychologic assessment. Arch Phys Med Rehabil 1990;71:326-329. Dellhag B & Burckhardt CS. Predictors of Hand Function in Patients with Rheumatoid Arthritis. Arthritis Care and Research 1995;8:16-20. Demers L, Weiss-Lambrou R, Ska B. The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0): An overview and recent progress. Technology and Disability 2002;14:101-105. Dijkers MP. Correlates of life satisfaction among persons with spinal cord injury. Arch Phys Med Rehabil 1999;80:867-876. Dijkers MP. A computer adaptive testing simulation applied to the FIM instrument motor component. Arch Phys Med Rehabil 2003;84:384-393. Dijkers MP, Yavuzer G. Short versions of the telephone motor Functional Independence Measure for use with persons with spinal cord injury. Arch Phys Med Rehabil 1999;80:14771484. Ditunno JF, Ditunno PL, Graziani V, Scivoletto G, Bernardi M, Castellano V, Marchetti M, Barbeau H Frankel HL D'Andrea Greve JM, Ko HY, Marshall R, Nance P. Walking index for spinal cord injury (WISCI): an international multicenter validity and reliability study. Spinal Cord. 2000;38:234-243. Dittuno PL Dittuno JF. Walking index for spinal cord injury (WISCI II): scale revision. Spinal Cord 2001;39:654-656. Ditunno JF, Burns AS, Marino RJ. 2005. Neurological and functional capacity outcome measures: essential to spinal cord injury clinical trials. J Rehab Res Dev 2005;42(Suppl 1): 35-41. Ditunno JF Jr, Barbeau H, Dobkin BH, Elashoff R, Harkema S, Marino RJ, Hauck WW, Apple D, Basso DM, Behrman A, Deforge D, Fugate L, Saulino M, Scott M, Chung J, Spinal Cord Injury Locomotor Trial Group. Validity of the walking scale for spinal cord injury and other domains of function in a multicenter clinical trial. Neurorehabil Neural Repair 2007; 21: 539550. Ditunno JF, Scivoletto G, Patrick M, Biering-Sorensen F, Abel R, Marino R. Validation of the walking index for spinal cord injury in a US and European clinical population. Spinal Cord 2008; 46: 181-188. Dodds TA, Martin DP, Stolov WC, Deyo RA. A validation of the functional independence measurement and its performance among rehabilitation inpatients Arch Phys Med Rehabil, 1993; 74: 531-536. Forlander DA, Bohannon RW. Rivermead Mobility Index: a brief review of research to date. Clinical Rehabilitation 1999; 13: 97-100. 25-93

Granger CV, Sherwood CC, Greer DS. Functional status measures in a comprehensive stroke care program. Arch Phys Med Rehabil 1977;58:555-561. Granger CV, Albrecht GL, Hamilton BB. Outcome of comprehensive medical rehabilitation: measurement by PULSES profile and the Barthel Index. Arch Phys Med Rehabil 1979;60:145-154. Granger CV, Hamilton BB, Keith RA et al. Advances in functional assessment for medical rehabilitation. Top Geriatr Rehabil 1986;1:59-74. Graves D. The construct validity and explanatory power of the AISA Motor Score and the FIM: implications for theoretical models of spinal cord injury Top Spinal Cord Inj Rehabil 2005;10:65-74. Gresham GE, Labi ML, Dittmar SS, Hicks JT, Joyce SZ, Stehlik MA. The Quadriplegia Index of Function (QIF): sensitivity and reliability demonstrated in a study of thirty quadriplegic patients. Paraplegia 1986;24:38-44. Grijalva I, Guizar-Sahagun G, Castaneda-Hernandez G, Mino D, Maldonado-Julian H, VidalCantu G, Ibarra A, Serra O, Salgado-Ceballos H, Arenas-Hernandez R. Efficacy and safety of 4-aminopyridine in patients with long-term spinal cord injury: a randomized, double-blind, placebo-controlled trial. Pharmacotherapy 2003;23:823-834. Hall KM, Cohen ME, Wright J, Call M, Werner P. Characteristics of the Functional Independence Measure in traumatic spinal cord injury. Arch Phys Med Rehabil 1999;80:1471-1476. Hamilton BB, Laughlin JA, Fiedler RC, Granger CV. Interrater reliability of the 7-level functional independence measure (FIM). Scand J Rehab Med 1994;26:115-119. Hamilton BB, Deutsch A, Russell C, Fiedler RC, Granger CV. Relation of disability costs to function: spinal cord injury. Arch Phys Med Rehabil 1999;80:385-391. Harvey LA, Batty J, Fahey A. Reliability of a tool for assessing mobility in wheelchair-dependent paraplegics. Spinal Cord 1998;36:427-431. Harvey LA, Batty J, Jones R, Crosbie J. Hand function of C6 and C7 tetraplegics 1-16 years following injury. Spinal Cord 2001;39:37-43. Heinemann AW, Kirk P, Hastie BA Semik,P, Hamilton BB, Linacre JM, Wright BD, Granger C. Relationships between disability measures and nursing effort during medical rehabilitation for patients with traumatic brain and spinal cord injury. Arch Phys Med Rehabil 1997;78:143149. Holbrook M, Skilbeck CE. An Activities Index for use with stroke patients. Age and Ageing 1983; 12: 166-170. Hsieh CL, Hsueh IP, Mao HF. Validity and responsiveness of the Rivermead Mobility Index in stroke patients. Scand J Rehab Med 2000; 32: 140-142. Hsieh CL, Jang Y, Yu TY, Wang WC, Sheu CF, Wang YH. A Rasch analysis of the Frenchay Activities Index in patients with spinal cord injury. Spine 2007; 32: 437-442. Itzkovich M, Tripolski M, Zeilig G, Ring H, Rosentul N, Ronen J, Spasser R, Gepstein R, Catz A. Rasch analysis of the Catz-Itzkovich spinal cord independence measure. Spinal Cord 2002;40:396-407. Itzkovich M, Tamir A, Philo O, Steinberg F, Ronen J, Spasser R, Gepstein R, Ring H, Catz A. Reliability of the Catz-Itzkovich Spinal Cord Independence Measure assessment by interview and comparison with observation. Am J Phys Med Rehabil 2003;82:267-272. Itzkovich M, Catz A, Biering-Srensen F. SCIM III Reliability And Validity: A Multi-Center International Study. ISCoS Meeting Oct 2005 Munich, Germany Abs 34/8 http://www.iscos.org.uk/index.html Accessed May 2, 2006 Itzkovich M, Gelernter I, Biering-Sorensen F, Weeks C, Laramee MT, Craven BC, Tonack M, Hitzig SL, Glaser E, Zeilig G, Aito S, Scivoletto G, Mecci M, Chadwick RJ, El Masry WS, Osman A, Glass CA, Silva P, Soni BM, Gardner BP, Savic G, Bergstrom EM, Bluvshtein V, 25-94

Ronen J, Catz A. The Spinal Cord Independence Measure (SCIM) version III: reliability and validity in a multi-center international study. Disabil Rehabil 2007; 29: 1926-1933. Jackson AB, Dijkers M, DeVivo MJ, Poczatek RB. A demographic profile of new traumatic spinal cord injuries: change and stability over 30 years. Arch Phys Med Rehabil 2004;85:17401748. Janssen TW, van Oers CA, van der Woude LH, Hollander AP. Reliability of heart rate response to non-steady-state activities of daily living in men with spinal cord injuries. Scand J Rehabil Med 1994;26:71-78. Jebsen RH, Taylor N, Trieschmann RB, Trotter MH, Howard LA. An objective and standardized test of hand function. Arch Phys Med Rehabil 1969;50:311-19. Jette AM, Haley SM, Kooyoomjian JT. Are the ICF Activity and Participation dimensions distinct? J Rehabil Med 2003;35:145-149. Keith RA, Lipsey MW. The role of theory in rehabilitation assessment, treatment and outcomes. In: Glueckauf RL, Sechrest LB, Bond GR, McDonel EC. (ed). Improving Assessment in Rehabilitation and Health. Sage Publications, Newbury Park, CA, 1993, p 33-60. Kennedy P, Hamilton LR. The needs assessment checklist: a clinical approach to measuring outcome. Spinal Cord 1999;37:136-139. Kilkens OJ, Dallmeijer AJ, De Witte LP, Van Der Woude LH, Post MW. The Wheelchair Circuit: Construct validity and responsiveness of a test to assess manual wheelchair mobility in persons with spinal cord injury. Arch Phys Med Rehabil 2004;85:424-431. Kilkens OJ, Post MW, van der Woude LH, Dallmeijer AJ, van den Heuvel WJ. The Wheelchair Circuit: reliability of a test to assess mobility in persons with spinal cord injuries. Arch Phys Med Rehabil 2002;83:1783-1788. Kirby RL, Dupuis DJ, Macphee AH, Coolen AL, Smith C, Best KL, Newton AM, Mountain AD, Macleod DA, Bonaparte JP. The Wheelchair Skills Test (Version 2.4): measurement properties. Arch Phys Med Rehabil 2004;85:794-804. Kirby RL, Swuste J, Dupuis DJ, MacLeod DA, Monroe R. The Wheelchair Skills Test: a pilot study of a new outcome measure. Arch Phys Med Rehabil 2002;83:10-18. Kroll T, Kehn M, Ho PS, Groah S. The SCI Exercise Self-Efficacy Scale (ESES): development and psychometric properties. Int J Behav Nutr Phys Act 2007; 4: 34. Kucukdeveci AA, Yavuzer G, Tennant A, Suldur N, Sonel B, Arasil T. Adaptation of the modified Barthel Index for use in physical medicine and rehabilitation in Turkey. Scand J Rehabil Med 2000;32:87-92. Land NE, Odding E, Duivenvoorden HJ, Bergen MP, Stam HJ. Tetraplegia Hand Activity Questionnaire (THAQ): the development, assessment of arm-hand function-related activities in tetraplegic patients with a spinal cord injury. Spinal Cord 2004;42:294-301. Lawton G, Lundgren-Nilsson A, Biering-Sorensen F, Tesio L, Slade A, Penta M, Grimby G, Ring H, Tennant A. Cross-cultural validity of FIM in spinal cord injury. Spinal Cord 2006; 44: 746752. Lundgren-Nilsson A, Tennant A, Grimby G, Sunnerhagen KS. Cross-diagnostic validity in a generic instrument: an example from the Functional Independence Measure in Scandinavia. Health Qual Life Outcomes 2006; 4: 55. Lynch KB, Bridle MJ. Validity of the Jebsen-Taylor Hand Function Test in Predicting Activities of Daily Living. The Occupational Therapy Journal of Research 1989; Volume 9, Number 5: 316-18. Lynch SM, Leahy P, Barker SP. Reliability of measurements obtained with a modified functional reach test in subjects with spinal cord injury. Phys Ther 1998;78:128-133. Mahoney FI, Barthel DW. Functional Evaluation: The Barthel Index. Md State Med J 1965;14:61-65.

25-95

Marino RJ, Shea JA, Stineman MG. The Capabilities of Upper Extremity Instrument: Reliability and Validity of a Measure of Functional Limitation in Tetraplegia. Arch Phys Med Rehabil 1998;79:1512-21. Marino RJ, Goin JE. Development of a short-form Quadriplegia Index of Function scale. Spinal Cord 1999;37:289-296. Marino RJ, Huang M, Knight P, Herbison GJ, Ditunno JF,Jr, Segal M. Assessing selfcare status in quadriplegia: comparison of the quadriplegia index of function (QIF) and the functional independence measure (FIM). Paraplegia 1993;31:225-233. Marino RJ. Use of the Capabilities of an Upper-Extremity Questionnaire to evaluate change in upper-extremity function during inpatient rehabilitation after spinal cord injury. Archives of Physical Medicine and Rehabilitation 2005;10:e21. Masedo AI, Hanley M, Jensen MP, Ehde D, Cardenas DD. Reliability and validity of a self-report FIM (FIM-SR) in persons with amputation or spinal cord injury and chronic pain. Am J Phys Med Rehabil 2005;84:167-176. Mathias S, Nayak US, Isaacs B. Balance in elderly patients: the get-up and go test. Arch Phys Med Rehabil. 1986;67:387-389. May LA, Butt C, Minor L, Kolbinson K, Tulloch K. Measurement reliability of functional tasks for person who self-propel a manual wheelchair. Arch Phys Med Rehabil 2003;84:578-83. McCabe MA, Granger CV. Content validity of a pediatric Functional Independence Measure. Appl Nurs Res 1990;3:120-122. McDowell I, Newell C. Measuring Health. A Guide to Rating Scales and Questionnaires. Oxford University Press, New York NY, 1996. McFarland SM, Sasser L, Boss BJ, Dickerson JL, Stelling JD. Self-care assessment tool for spinal cord injured persons. SCI Nursing 1992;9:111-116. McKinley WO, Seel RT, Gadi RK, Tewksbury MA. Nontraumatic vs. traumatic spinal cord injury: a rehabilitation outcome comparison. Am J Phys Med Rehabil 2001;80:693-699. Middleton JW, Harvey LA, Batty J, Cameron I, Quirk R, Winstanley J. Five additional mobility and locomotor items to improve responsiveness of the FIM in wheelchair-dependent individuals with spinal cord injury. Spinal Cord 2006; 44: 495-504. Morganti B, Scivoletto G, Ditunno P, Ditunno JF, Molinari M. Walking Index for spinal cord injury (WISCI): criterion validation. Spinal Cord 2005;43:27-33. Mulcahey MJ, Bet RR, Kozin SH, Smith BT, Hutchinson D, Lutz C. Implantation of the Freehand System during initial rehabilitation using minimally invasive techniques. Spinal Cord 2004;42:146-155. Mulcahey MJ, Smith BT, Betz RR. Psychometric rigor of the Grasp and REslease Test for measuring functional limitation of persons with tetraplegia: a preliminary analysis. J Spinal Cord Med 2004;27:41-6. Noreau L & Vachon J. Comparison of three methods to assess muscular strength in individuals with spinal cord injury. Spinal Cord 1998;36:716-723. O'Connor RJ, Cano SJ, Thompson AJ, Hobart JC. Exploring rating scale responsiveness: does the total score reflect the sum of its parts? Neurology 2004;62:1842-1844. Ottenbacher KJ, Hsu Y, Granger CV, Fiedler RC. The reliability of the functional independence measure: a quantitative review. Arch Phys Med Rehabil 1996;77:1226-1232. Plantinga E, Tiesinga LJ, van der Schans CP, Middel B. The criterion-related validity of the Northwick Park Dependency Score as a generic nursing dependency instrument for different rehabilitation patient groups. Clin Rehabil 2006; 20: 921-926. Popovic MR, Thrasher TA, Adams ME, Takes V, Zivanovic V, Tonack MI. Functional electrical therapy: retraining grasping in spinal cord injury. Spinal Cord 2006;44:143-151. Post MWM, van Lieshout F, Seelen HAM, Snoek GJ, IJzerman MJ, Pons C. Measurement properties of the short version of the Van Lieshout test for arm/hand function of persons with tetraplegia after spinal cord injury. Spinal Cord 2006; 44: 763-771. 25-96

Pruitt SD, Wahlgren DR, Epping-Jordan JE, Rossi AL. Health behavior in persons with spinal cord injury: development and initial validation of an outcome measure. Spinal Cord 1998;36:724-731 Ronen J, Itzkovich M, Bluvshtein V, Thaleisnik M, Goldin D, Gelernter I, David R, Gepstein R, Catz A. Length of stay in hospital following spinal cord lesions in Israel. Spinal Cord 2004;42:353-358. Sander RA. Measurement of functional status in the spinal cord injured patient. Saint Louis University; 2004. Scivoletto G, Morganti B, Ditunno P, Ditunno JF, Molinari M. Effects on age on spinal cord lesion patients' rehabilitation. Spinal Cord 2003;41:457-464. Schule R, Holland-Letz T, Klimpe S, Kassubek J, Klopstock T, Mall V, Otto S, Winner B, Schols L. The Spastic Paraplegia Rating Scale (SPRS): a reliable and valid measure of disease severity. Neurology 2006; 67: 430-434. Sollerman C & Ejeskr A. Sollerman Hand Function Test. A Standardised Method and its Use in Tetraplegic Patients. Scand J Plast Reconstr Hand Surg 1995;29:167-176. Spaulding SJ, McPherson HH, Strachota E, Kuphal M, Ramponi M. Jebsen Hand Function Test: Performance of the Uninvolved Hand in Hemiplegia and of Right-handed, Right and Left Hemiplegic Persons. Arch Phys Rehabil 1988;69:419-22. Spooren AI, Janssen-Potten YJ, Post MW, Kerckhofs E, Nene A, Seelen HA. Measuring change in arm hand skilled performance in persons with a cervical spinal cord injury: responsiveness of the Van Lieshout Test. Spinal Cord 2006; 44: 772-779. Stern EB. Stability of the Jebsen-Taylor Hand Function Test Across Three Test Sessions. The American Journal of Occupational Therapy 1992;46:647-49. Stroh Wuolle K, Van Doren CL, Thorpe GB, Keith MW, Peckham PH. Development of Quantitative Hand Grasp and Release Test for Patients with Tetraplegia using a Hand Neuroprosthesis. The Journal of Hand Surgery: 1994;19:209-18. Schwartz S, Cohen ME, Herbison GJ, Shah A. Relationship Between Two Measure of Upper Extremity Strength: Manual Muscle Test Compared to Hand-Held Myometry. Arch Phys Med Rehabil 1992;73:1063-1068. Taricco M, Apolone G, Colombo C, Filardo G, Telaro E, Liberati A. Functional Status in Patients With Spinal Cord Injury: A New Standardized Measurement Scale. Arch Phys Med Rehabil 2000; 81: 1173-80. Taylor P, Esnouf J, Hobby J. The functional impact of the Freehand System on tetraplegic hand function. Clinical results. Spinal Cord 2002;11:550-6. Triolo RJ, Bevelheimer T, Eisenhower G, Wormser D. Inter-rater reliability of a clinical test of standing function. J Spinal Cord Med. 1994;18:14-22. van Hedel HJA, Wirz M, Curt A. Improving walking assessment in subjects with incomplete spinal cord injury: responsiveness. Spinal Cord 2006;44:352-356. van Hedel HJA Wirz M, Dietz V. Assessing walking ability in subjects with spinal cord injury: validity and reliability of 3 walking tests. Arch Phys Med Rehabil 2005;86:190-196. Washburn RA, Smith KW, Jette AM, Janney CA. The Physical Activity Scale for the Elderly (PASE): development and evaluation. J Clin Epidemiol. 1993 Feb;46:153-62. Washburn RA, Zhu W, McAuley E, Frogley M, Figoni SF. The Physical Activity Scale for Individuals With Physical Disabilities: Development and Evaluation. Arch Phys Med Rehabil 2002; 83: 193-200. Wirth B, van Hedel HJ, Kometer B, Dietz V, Curt A. Changes in Activity After a Complete Spinal Cord Injury as Measured by the Spinal Cord Independence Measure II (SCIM II). Neurorehabil Neural Repair 2007. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization, 2001. 25-97

Yavuz N, Tezyurek M, Akyuz M. A comparison of two functional tests in quadriplegia: the quadriplegia index of function and the functional independence measure. Spinal Cord 1998;36:832-837.

25-98

25.4 Participation Conceptualization and Definition of Participation: There has been tremendous progress in understanding how individuals resume participating in life activities following a health condition. In 2001, when International Classification of Functioning, Disability and Health (ICF) (Gray & Hendershot 2000) replaced the International Classification of Impairments, Disability and Handicap (ICIDH) there was a change from concept handicap to participation. Participation is defined in the ICF as involvement in a life situation and participation restriction is defined as problems an individual may experience while involved in life situations (World Health Organization 2001). This is a significant shift because handicap focused on the disadvantages for an individual in life roles considered normal (i.e. based on age, sex, and social and cultural factors), which was also referred to as a societal perspective. It is important to note that the World Health Organizations ICIDH and ICF models are just one way to conceptualize measuring life roles/activities. Other disciplines have proposed measuring similar concepts but have used alternate terms, which are conceptually quite similar, and include: social health; social adjustment; social or community re-integration; independent living; instrumental activities of daily living; and quality of life (Dijkers et al. 2000). Since the concept of measuring involvement in life situations is very broad, there will likely never be consensus, as to what life dimensions should be included and what construct should be addressed (Dijkers et al. 2000). In the ICF, activity and participation domains are listed together and the user of the model decides which ones to consider activity versus participation. Jette et al. (2003) analyzed items based on the ICF concepts activity and participation and demonstrated that they are distinct concepts, with the former assessing basic tasks (e.g. the ability to climb stairs) and the latter assessing more complex life tasks (e.g. preparing meals). It has been recommended that in future revisions of the ICF that these two concepts are better defined (Dijkers et al. 2000; Whiteneck 2006). The perspective of how to assess participation has also evolved over time. Measures of handicap primarily captured observable information, such as the frequency which an individual performed roles (e.g. hours of paid work) and in this review are called measures assessing objective participation. However, measures of objective participation do not capture the individuals perspective about the impact of the health condition and the problems they experience when carrying out everyday activities or fulfilling social roles. As a result, developers incorporated the perspective of participation as perceived by the individual which has been termed subjective or person-perceived participation (i.e. cognitive, emotional and motivational aspects of participation) (Noreau et al. 2005). Although the ICF model does not explicitly include a subjective dimension, the replacement of the term handicap with the term participation and the inclusion of a broader range of life roles provide the opportunity to capture subjective information. In this review, the term objective participation will be used to describe handicap and the term subjective participation will describe person perceived participation. Recommendations: For the purpose of this review, the measures included in this section had questions related to most ICF dimensions of participation, particularly, interpersonal relations/interactions/relationships, major life areas (e.g. education, employment), and/or community/ social/civic life. All of the measures have been tested, to varying degrees on individuals with SCI. The measurement of participation has been termed the most meaningful outcome of rehabilitation (Cicerone 2004); however, it is probably also the most challenging to measure 25-99

since there are many things that contribute to a persons level of participation. It is important not to select an outcome measure just because it is commonly used, but rather consider whether it provides information about the outcome of interest (Backman 2005). In this review consideration was given to the domains (i.e. content) which is frequently determined from the conceptual model, the perspective (i.e. objective versus subjective participation) of a particular measure, the psychometric properties as well as logistical issues (e.g. number of questions, patient burden etc.). The measures included in this review were based on various conceptual models. Some of the measures have been developed based on the ICIDH model (i.e. CHART) or the ICF model (IPAQ). Other measures have used other models such as the Disability Creation Process model (Life-H). The RNL and the PARA-SCI did not use a specific model, but were developed based on the concepts re-integration and physical activity, respectively. All of the measures included multiple domains (i.e. are generic) with the exception of the PARA-SCI, which just focused on physical activity. The domains included vary depending on how participation was defined. Most measures (except PARA-SCI) included some items on self-care, mobility, family/social relations and work/education a few measures included details on items such as parenting, attending religious services or conducting economic transactions. The content and the measurement properties of the participation measures are designed to be used in the community setting. The participation perspective varies among the measures. Some measures primarily assess objective participation (CHART, PARA-SCI) while other assess subjective participation (IPAQ, Life-H, RNL). Objective participation measures such as the CHART are primarily useful for research purposes to describe from a societal point of view, how individuals with SCI differ from other patient populations and healthy controls. The CHART is probably the most widely used participation measure for individuals with SCI. However, information provided in the CHART does not include the individuals perspective and so information about how the person performs the tasks as well as what tasks are important to them is not captured, which is a significant limitation. In contrast, the subjective measures of participation (IPAQ, Life-H, RNL) offer tremendous potential to clinicians and researches working in the area of SCI. Most of the participation measures have established some aspects of reliability and validity. The IPAQ is a relatively new measures and so not much has been published specifically on individuals with SCI. To date, very little has been published on responsiveness for any of the measures, with the exception of the IPAQ. In Canada, data using the RNL in individuals with SCI will become available since it is part of the NRS, although little work has been done to establish its psychometric properties in this population. Finally, measures as the LIFE-H include information on satisfaction with participation and clinicians and researchers can use this information to identify areas or target interventions to those life activities that are most important to the individual. Conclusion Participation measures, particularly ones that measure subjective participation, provide important information for individuals working in the field of rehabilitation since they assess how the individual is doing in the community, which some would argue is the ultimate rehabilitation outcome. Future work establishing the psychometric properties of participation instruments will be essential to ensure the measures are reliable, valid and responsive for assessing participation in individuals with SCI thereby enabling clinicians and researchers to select appropriate measures. 25-100

The outcome measures reviewed under this category include. 25.4.1 Assessment of Life Habits Scale (LIFE-H) ..............................................................25-102 25.4.2 The Craig Handicap Assessment & Reporting Technique (CHART) .......................25-103 25.4.3 Impact on Participation and Autonomy Questionnaire (IPAQ) .................................25-104 25.4.4 The Physical Activity Recall Assessment for People with Spinal Cord injury (PARA-SCI) ...............................................................................................................................25-105 25.4.5 Reintegration to Normal Living (RNL) Index ............................................................25-106 Participation References ....................................................................................................25-107

25-101

25.4 Participation 25.4.1 Assessment of Life Habits Scale (LIFE-H) The LIFE-H was developed using the Disability Creation Process Model (DCP) to assess life habits and handicap situations, which are concepts related to social participation (Noreau et al. 2002; Dumont et al. 2003). Life habits are defined as those habits that ensure the survival and development of a person in society throughout his or her life and they include activities ranging from ADLs to social roles (Fougeyrollas et al. 1998). A handicap situation is a disruption in the accomplishment of a persons life habits, taking into account age, sex and socio-cultural identity, resulting from impairments, disabilities or environmental factors (Fougeyrollas et al. 1998). The LIFE-H includes 12 categories: nutrition, fitness, personal care, communication, housing, mobility, responsibilities, interpersonal relationships, community life, education, employment, and recreation. The long form (Version 3.0, June 2003) contains 240 items, whereas the short form contains 77 items (Version 3.1, June 2003) (Noreau et al. 2002). The long form can be used as a whole or as sub-sections and the short form is a general measure of handicap. The response categories consider the level of difficulty (5 point ordinal scale) and the type of assistance (4 point ordinal scale) required to do each life habit. Satisfaction for each item is reported using a 5-point scale (1=very dissatisfied to 5=very satisfied). Procedure: Self- or therapist-administered. The level of difficulty and the types of assistance are combined and weighted to derive an accomplishment score: ( Scores x 10)/(number of applicable life habits x 9). Total scores for each life habit category range from 0-10. Advantages: The LIFE-H is a conceptually strong tool that incorporates the interaction of the individual and their environment, and thus, overlaps with the ICF (Fougeyrollas et al. 1998; Noreau et al. 1998; 2000). Input was obtained from rehabilitation experts and individuals with SCI (children and adults). Participation is based on the individuals perspective of performance rather than describing it from a societal perspective. Rasch modeling applied to the short form support its measurement model (Dumont et al. 2003). Limitations: Satisfaction data is not incorporated into the accomplishment score and it is unclear if this information was used in the cited research. There is no responsiveness data. Interpretability: Information from the accomplishment score describes an individuals performance for each life habit (i.e. social participation). Satisfaction information may guide clinical interventions. There are no published norms; however, data from various SCI studies provide some basis for comparison (Fougeyrollas et al. 1998; Noreau et al. 2000). Acceptability: The long form requires 20 to 120 minutes to complete (depending on which sections are used) and the short form takes between 30 to 60 minutes. Feasibility: No special training is required to administer or score the LIFE-H. It was originally developed in French and translated into English. Clinical Summary: Social participation is a meaningful rehabilitation outcome. Performance and satisfaction measures provide relevant community based information which can be used to guide clinical interventions. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling (S) TR +++* +++ Construct ++** N/A N/A N/A (L) TR ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; S=Short Version; L=Long Version *: TR values were based on the overall values for the short and long version of the LIFE-H for adults. **: Note the LIFE-H was compared to the CHART and the CIQ which assess objective handicap/participation and so a high correlation is not expected. Rigor ++

25-102

25.4 Participation 25.4.2 The Craig Handicap Assessment & Reporting Technique (CHART) CHART was designed to measure the level of handicap in a community setting and was modeled on the ICIDH-1 (WHO 1980). The handicap dimension assessed initially the degree of disadvantage in 5 out of 6 handicap dimensions (physical independence, mobility, occupation, social integration, economic self-sufficiency) of people living in the community (Hall et al. 1998). Basically, CHART collects information on the degree to which the respondent fulfills the roles typically expected from people without disabilities. The original CHART consisted of 27 questions, 2 to 7 questions per subscale (Whiteneck et al. 1992). In 1995, some items were added to the instrument to cover the domain of cognitive independence (5 additional questions) (Cusick et al. 2001). A short form (CHART-SF) has been developed (19 questions) (Whiteneck et al. 1992). Procedure: The questions can be answered in a quantifiable, behavioral terms (e.g.: hours of physical assistance, how much time is someone with you to assist you, how many relatives do you visit, etc.). For each CHART dimension, a scoring procedure allows to compute a score from 0 to 100 points, the latter being the maximum attainable corresponding to a role fulfillment equivalent to that of most individuals without disabilities Advantages: - Relatively simple procedures, wording with few ambiguity and a development based on strong methodological studies that showed a good level of reliability and validity. - Has been tested with proxies (Cusick et al. 2001) Limitations: - Potential ceiling effects in thoracic lesions for physical and cognitive independence, mobility and social integration (Hall et al. 1998). - Its conceptual base differs from the new approach of participation as defined by the International Classification of Functioning (WHO 2001) - Given its quantitative base, one should be cautious in assessing the quality of social participation with CHART. For instance, counting the number of people contacted by the respondent is not necessarily an indicator of the quality of social relationships (social integration dimension), and fewer positive relationships is probably a more valuable asset for any individual than numerous negative relationships (Whiteneck et al. 1992). Interpretability: Total score is potentially a misleading assessment of handicap and the use of subscales is recommended. Norms and profiles of handicap have been widely published. Acceptability: Wording and clarity of questions make CHART easy to complete. Questions on cognitive independence might be seen as irrelevant in SCI population. Feasibility: No specific training is required to administer the CHART. An online pdf version of the CHART can be obtained from http://www.tbims.org/combi/chart/CHART.pdf. Clinical Summary: The CHART provides useful information mostly for research purposes to establish profile in SCI population. It is widely used and particularly in the U.S. National Spinal Cord Injury Database. Clinical utility remains to be demonstrated as no report informs on clinical use of the CHART. Psychometric Summary
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR +++ ++ Discriminant ++ N/A N/A N/A IR +++ PR +++, except SI (+, ++) Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IR: Inter-rater reliability; PR= Proxy-subject reliability; SI= Social integration Rigor ++

25-103

25.4 Participation 25.4.3 Impact on Participation and Autonomy Questionnaire (IPAQ) The Impact on Participation and Autonomy Questionnaire (IPAQ) is a self-administered questionnaire developed using the ICF model of human functioning and disability (Cardol et al. 1999). It was developed after a review of the literature revealed that there were no instruments available which obtained information about participation from the perspective of the individual. The IPAQ assesses autonomy and participation as perceived by the individual. It was developed using input from experienced clinicians and individuals attending an out-patient rehabilitation unit (e.g. stroke, SCI, rheumatoid arthritis, and neuromuscular conditions) (Cardol et al. 1999; 2001; 2002a; 2002b). The IPAQ measures two different aspects of participation: 1) perceived participation and 2) the experience of problems for each aspect of participation. The participation domains include: autonomy outdoors (e.g. visiting friends, leisure time); autonomy indoors (e.g. self-care); family role (e.g. housework); social relations; paid work; and education. The perceived participation scale consists of 31 items which are assessed using a 5 point rating scale (1=very good and 5=very poor). The problem scale contains 8 items which are assessed using a 3 point rating scale (0=no problem and 2=severe problem). Procedure: The questionnaire is completed by self-report or by interviewer. A participation score and a problem score are produced by summing items in each scale. The participation score range from 30-155 (higher score = lower participation) and a problem score ranges from 0-16 (higher score = more problems). Advantages: The IPAQ is a relatively short questionnaire that has been used in various patient populations (e.g. stroke, SCI, fibromyalgia, etc.). Limitations: The IPAQ is a relatively new measure and as a result there has been limited information on its psychometric properties for individuals with SCI. Interpretability: The IPAQ provides a measure of the individuals perceived autonomy and problems in life activities (i.e. participation). Although no normative data exists, published data is available to compare results for individuals with SCI. A study published by Larsson Lund et al. (2005) reported that approximately 50% of individuals with SCI did not complete the questions on work and education stating that it was not applicable to them. Acceptability: The IPAQ appears to be easy to understand and takes approximately 20 minutes to complete. Feasibility: The IPAQ questions are included in the published articles. It does not require any special training to administer or score. The IPAQ was originally published in Dutch and has been translated into English, Swedish, and German. Clinical Summary: The IPAQ is a new generic measure which assesses participation from the perspective of the individual. It conceptually compatible with the WHOs ICF model. The IPAQ can be used to discriminate between individuals with different health conditions. More research assessing the responsiveness of the IPAQ will determine if it can be used to evaluate community interventions targeted at improving participation in life activities. Psychometric Summary
Rigor + Reliability Results TR domains +++ TR items ++ IC +++ Rigor ++ Validity Results Convergent ++ Construct ++* Rigor ++ Responsiveness Results Floor/ceiling +++ N/A

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency; IO=interobserver; varied (re. floor/ceiling effects; mixed results). * internal scale validity was assessed by Rasch rating scale analysis. 27 items demonstrated acceptable goodness of fit, thereby constituting a valid unidimensional scale. The hierarchy of items can be said to support construct validity.

25-104

25.4 Participation 25.4.4 The Physical Activity Recall Assessment for People with Spinal Cord injury (PARA-SCI) The PARA-SCI has been designed to capture information on the type, frequency, duration and intensity of physical activity carried out by people with SCI using a wheelchair as their primary mode of mobility (Martin Ginis et al. 2005; Latimer et al. 2006). Interview protocol: An interview format was developed to capture activities performed over the last 3 days which are divided into 8 periods from morning routine to evening routine. The 2 routine periods are subdivided to capture activity related to daily living (transfer, bowel and bladder management, dressing, etc.). The interviewer asks the respondent about general activities performed during each period. The number of minutes spent on each specific activity is recorded and the activity is coded into 2 dimensions: Leisure-time physical activity or lifestyle activity (Martin Ginis et al. 2005). Intensity Classification system: This system was developed from empirical data collected during maximal exercise testing (VO2max and 1RM muscle workload for chest press and bicep curl). From a list of adjectives, participants of the experiment identified words that described how they felt during exercise. Based on their responses, definitions were created for mild, moderate and heavy intensity exercise (Martin Ginis et al. 2005). Procedure: Data are reported as an average number of minutes of activity per day (mild, moderate, heavy, total) for the two dimensions (Leisure-time physical activity or lifestyle activity) and a cumulative index. Advantages: - Provide a quantitative measure of physical activity that takes into account the intensity of exercise. - Specifically developed for SCI population and takes into account the activities of daily living. Limitations: - The 3 days recall period (capture the activities that are actually performed) enhanced the accuracy of the data but might lead to an underestimation of the overall physical activity if leisure-time activities are not performed on a regular basis (3-4x /week). - Construct validity has been only partially demonstrated and has to be proven by comparing the measure with another measure of physical activity (Latimer et al. 2006). Interpretability: A relatively new instrument but the design seems to be consistent with the usual dimension of physical activity. Acceptability: On average, the interview can be completed within 20-30 minutes. Feasibility: No specific training is required to administer the PARA-SCI. Flowcharts are used to guide the interviewer and provides prompts to help respondents recall the different types of physical activities. Clinical Summary: PARA-SCI is a promising instrument that provides information on the intensity-based type of physical activities. It has to be used more extensively before a final assessment is completed. Psychometric Summary:
Validity Responsiveness Results Rigor Results Floor/ceiling Concurrent ++ N/A N/A N/A Construct + Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test Rigor ++ Rigor + Reliability Results TR ++, +++

25-105

25.4 Participation 25.4.5 Reintegration to Normal Living (RNL) Index The Reintegration to Normal Living (RNL) Index is a self-report questionnaire that assesses an individuals satisfaction with performance in life activities (May & Warren 2002). The RNL assesses mobility, self-care, daily activity, recreational activity, and family roles. It was developed based on interviews with clinicians, patients and other their significant others. It contains 11 items and each one is scored using a 10 cm visual analogue scale anchored with phrases (0=no reintegration and 10=complete reintegration). Wheelchairs or other assistive/adaptive aids may be used when considering how to answer the questions. The CIHI National Rehabilitation Reporting System (NRS) uses a 3 point ordinal scale (0=does not describe my situation; 1=partially describes my situation; and 3=fully describes my situation). Procedure: The questionnaire is completed by self-report or by interviewer. The total score = sum (points all 11 items) and the adjusted score = (total score)/110 * 100. A minimum adjusted score is 0 and a maximum adjusted score is 100. No information was obtained on how the CIHI NRS scores the RNL. Advantages: The RNL is a short measure of participation that has been used in various patient populations. It is currently part of the CIHI NRS and is collected at the time of follow-up. Since the RNL is widely used with various patient populations it is possible to compare results. Limitations: Although the RNL is commonly used as part of the NRS for individuals with SCI, there has been very little research conducted on the psychometric properties for this patient population. In the literature the concepts of participation and quality of life are not always clearly defined and the RNL has been classified as a proxy measure of quality of life which may cause some confusion regarding the construct being measured (May & Warren 2002). Interpretability: The RNL provides a measure of the individuals perceived re-integration to life activities. Data is available on the CIHI website for individuals with SCI. Results can also be compared to other research studies. Acceptability: The RNL is easy to understand and does not take long to complete (i.e. 11 items). Feasibility: A copy of the RNL is available at no cost and can be found on the internet. It does not require any special training to administer or score. Clinical Summary: The RNL evaluates the overall function of individuals who have received rehabilitation by assessing the degree to which they are able to return to a normal life. The RNL is currently part of the NRS and is being administered at follow-up to various patient populations, including SCI. Psychometric Summary:
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Construct ++ N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-106

Participation References Backman CL. Outcomes and outcome measures: measuring what matters is in the eye of the beholder. Can J Occup Ther 2005;72:259-264. Cardol M, Beelen A, van den Bos GA, de Jong BA, de Groot IJ, de Haan RJ. Responsiveness of the Impact on Participation and Autonomy Questionnaire. Arch Phys Med Rehabil 2002; 83:1524-1529. Cardol M, de Haan RJ, van den Bos GA, de Jong BA, de Groot IJ. The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA). Clin Rehabil 1999;13:411-419. Cardol M, de Haan RJ, de Jong BA, van den Bos GA, de Groot IJ. Psychometric properties of the Impact on Participation and Autonomy Questionnaire. Arch Phys Med Rehabil 2001; 82:210-216. Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de Haan RJ. Beyond disability: perceived participation in people with a chronic disabling condition. Clin Rehabil 2002;16:2735. Cicerone KD. Participation as an outcome of traumatic brain injury rehabilitation. J Head Trauma Rehabil 2004;19:494-501. Cusick C, Brook C, Whiteneck G. The Use of Proxies in Community Integration Research. Arch Phys Med Rehabil 2001;82:1018-1024. Dijkers MP, Whiteneck G, El Jaroudi R. Measures of social outcomes in disability research. Arch Phys Med Rehabil 2000;81:S63-S80. Dumont C, Bertrand R, Fougeyrollas P, Gervais M. Rasch modeling and the measurement of social participation. J Appl Meas 2003;4:309-325. Fougeyrollas P, Noreau L, Bergeron H, Cloutier R, Dion SA, St-Michel G. Social consequences of long term impairments and disabilities: conceptual approach and assessment of handicap. Int J of Rehab Res 1998;21:127-141. Gray DB, Hendershot GE. The ICIDH-2: developments for a new era of outcomes research. Arch Phys Med Rehabil 2000;81:S10-S14. Hall K, Dijkers M, Whiteneck G, Brooks C, Krause J. The Craig Handicap Assessment and reporting technique (CHART): Metric properties and scoring. Topics in Spinal Cord Injury Rehabilitation 1998;4:16-30. Jette AM, Haley SM, Kooyoomjian JT. Are the ICF Activity and Participation dimensions distinct? J Rehabil Med 2003;35:145-149. Latimer A, Martin Ginis K, Craven B, Hicks A. The Physical Activity Recall Assessment for People with Spinal Cord Injury: Validity. Med Sci Sports Exerc 2006;38:208-216. Lund M, Nordlund A, Nygard L, Lexell J, Bernspang B. Perceptions of participants and predictors of perceived problems with participation in persons with spinal cord injury. J Rehabil Med 2005; 37:3-8. Lund ML, Fisher AG, Lexell J, Bernspang B. Impact on participation and autonomy questionnaire: internal scale validity of the Swedish version for use in people with spinal cord injury. J Rehabil Med 2007; 39: 156-162. Martin Ginis K, Latimer A, Hicks A, Craven B. development and Assessment of an Activity Measure for People with Spinal Cord Injury. Med Sci Sports Exerc 2005;37:1099-1111. May LA, Warren S. Measuring quality of life of persons with spinal cord injury: external and structural validity. Spinal Cord 2002;40:341-350. Noreau L, Fougeyrollas P. Long-term consequences of Spinal Cord Injury on social participation: The Occurrence of Handicap Situations. Disabil Rehabil 2000;22:170-180. Noreau L, Fougeyrollas P, Labb A, Larame MT. Comparison of 2 measurement tools addressing the concept of handicap:CHART and LIFE-H. J Spinal Cord Med 1998;21:151. 25-107

Noreau L, Fougeyrollas P, Post M, Asano N. Participation after spinal cord injury: the evolution of conceptualization and measurement. J Neurol Phys Ther 2005;29:147-156. Noreau L, Fougeyrollas P, Vincent C. The LIFE-H: Assessment of the quality of social participation. Technology and Disability 2002;14:113-118. Whiteneck G. Conceptual models of disability: past, present, and future. In: Institute of Medicine, ed. Workshop on Disability in America: A New Look..: National Academies Press, Washington DC, 2006, p 50-66. Whiteneck G, Charlifue S, Gerhart K, Overholser J, Richardson G. Quantifying handicap: a new measure of long-term rehabilitation outcomes. Arch Phys Med Rehabil 1992;73:519-526. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization, 1980. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland: World Health Organization, 2001.

25-108

25.5 Quality of Life Conceptualization and definition of QOL Although the term goodness of life (Baker & Intagliata 1982) seems appropriate to express the overall concept of quality of life (QOL), its apparent simplicity hides a multidimensional concept that is among the most difficult one to define and to translate into a functioning and operating reality. Nonetheless, 2 main conceptualizations of QOL are well-accepted: (1) the subjective approach whose focal point is the persons emotional or cognitive assessment of the congruence between his/her life expectations and achievement, usually associated with life satisfaction or well-being and (2) the objective approach, based on ones characteristics that can be objectively measured by an external appraiser or outsider (Dijkers 2003). The latter includes the concept of Health-related Quality of Life (HRQOL) that focuses mostly on physical and mental health, social and role achievements, and thus it is more oriented toward functional performance than is subjective QOL (Wood-Dauphinee et al. 2002). As the HRQOL tends to address dimensions that influence subjective QOL (health status, functioning), Post et al. proposed a superordinate construct of QOL that includes both HRQOL and well-being which was operationalized from the International Classification Functioning, Disability and Health (ICF) (Post et al. 1999; WHO 2001; Post & Noreau 2005). This approach is quite useful for the rehabilitation community as it permits to integrate most of the dimensions that might be measured to cover the construct of QOL in the field of disability and rehabilitation. Thus QOL tools are either investigator-determined enabling statistical comparisons between an experimental and control group or they are more individualized allowing the participating subject to weigh the value (importance) of any individual field in the self-assessment of their own QOL. Measurement issues On an operational basis, Dijkers (2003) nicely summarized that QOL measures focus on three dimensions: 1) the persons achievements (performance) or 2) expectations, or 3) the reaction to the congruence between his/her life expectations and achievements. The HRQOL measures mainly (but not exclusively) focus on achievement as the subjective QOL measures address the reaction (or satisfaction) regarding the achievements. The current review focuses on a number of HRQOL and subjective measures that were previously reported in the field of SCI for which psychometric testing has been published and assessed as adequate or excellent. Most of the measures are not disability-specific, meaning that they have not been specifically developed for the context of people with disability in general or specifically for individuals with SCI. As such, psychometric properties are usually stronger with general population or groups having conditions other than SCI. Recommendations (HRQOL) Three generic instruments addressing the concept of HRQOL are recommended despite some limitations: The short version of the World Health Organization Quality of Life Assessment (WHOQOL-BREF), the Sickness Impact Profile (SIP-68), and the MOS 36-Item Short-Form Health Survey (SF-36) or its shorter form (SF-12). The WHOQOL (BREF) is a promising instrument with a strong conceptualization but its psychometric testing in SCI is limited. Despite their wide use, SIP-68 and SF-36 should be used with caution as limitations were previously reported (Andresen & Meyers 2000; Post & Noreau 2005). For example, the SF-36 physical functioning scale has been found inappropriate in individuals with mobility impairments because several items refer to climbing or walking. Post et al. (1996) found the SIP68 valid for use in 25-109

persons with SCI but had to develop a recoding procedure to deal with several questions about walking difficulties that are not applicable to persons who cannot walk. Moreover, to answer the questions in the context of health can be problematic as some persons with SCI will distinguish health from disability. People perceive themselves as healthy, defining SCI and its consequences as a disability, and not as a disease. A utility measure (Quality of Well-being) has been reviewed but little work has been done to establish its psychometric properties in individuals with SCI. Moreover, the usefulness of the concept (utility) in the field of rehabilitation might be limited in regards of clinical purposes. Finally, the Qualiveen a SCI specific measure of urinary related QOL has been reviewed. Despite excellent psychometric properties its scope is limited. Recommendations (subjective QOL) Four different instruments focusing on life satisfaction have been included in the current review: The Satisfaction with Life Scale (SWLS), the Life Satisfaction Questionnaire (LISAT-11), The Quality of Life Index (QLI) and the Quality of Life for Adults with Physical Disabilities (QOLP-PD) With some pros and cons, they addresses the life satisfaction as a whole, or with a few questions focusing on general life dimensions or with a more-in depth assessment of importance and satisfaction regarding life domains. SWLS is quite brief, mostly useful in research setting but does not bring about information that can be assessed as useful for clinical interventions. At the opposite, QLI and QOLP-PD can inform a lot on some areas of life dissatisfaction hut they might be seen as lengthy in some setting. QOLP-PD is a promising instrument with a good conceptualization but it is at an early stage of development with a few psychometric characteristics already tested. The LISAT-11 might be seen a good compromise for research and clinical purposes as it contains items (life dimensions) that are relevant to SCI. Some data has already been published in the field (Post et al. 1998; Schnherr et al. 2005; Kennedy et al. 2006) and it has previously been recommended by an expert committee on QOL (Wood-Dauphinee et al. 2002). Its main limitation remains the lack of psychometric information relative to the field of SCI. Conclusion In the process of selecting tools to assess QOL, one should consider the purposefulness, usefulness and psychometric properties of measures. For example, generic and global outcomes measures might be useful for comparison across populations but might not bring about information for needs related to community interventions. At the opposite, more specific or detailed measures might be seen as too lengthy for some research or survey settings or as having complex scoring procedures. In many situations, the choice might be driven by a tradeoff between a measure that fully meets ones needs and another one that will limit the respondents burden. But in all cases, a careful evaluation of the psychometric characteristics is mandatory before making the final choice. The outcome measures reviewed under this category include: 25.5.1 25.5.2 25.5.3 25.5.4 25.5.5 25.5.6 25.5.7 Life Satisfaction Questionnaire (LISAT -9 -11) ........................................................25-112 Quality of Life Index (QLI, Ferrans & Powers) .........................................................25-113 Quality of Life Profile for Adults with Physical Disabilities (QOLP-PD).....................25-114 Quality of Well Being...............................................................................................25-115 Qualiveen................................................................................................................25-116 Satisfaction with Life Scale (SWLS, Deiner Scale) ..................................................25-117 The Short Form 12 (SF-12) and Short Form 36 (SF-36)..........................................25-118 25-110

25.5.8 The Sickness Impact Profile 68 (SIP 68) .................................................................25-119 25.5.9 WHOQOL (BREF)...................................................................................................25-120 Quality of Life References..................................................................................................25-121

25-111

25.5 Quality of Life 25.5.1 Life Satisfaction Questionnaire (LISAT -9 -11) The Life Satisfaction Questionnaire (LISAT) was originally developed as a checklist rather than a measure of life satisfaction (Fugl-Meyer et al. 1991). The LISAT-9 is comprised of 1 general question about satisfaction with life as a whole and 8 other questions targeting important life domains: vocational, financial and leisure situations, contacts with friends, sexual life, self-care management, family life, and partner relationships. More recently, physical and psychological health were added (LISAT-11) (Melin et al. 2003). Procedure: Each item (domain) is scored on a 6-point scale from 1, very dissatisfied, to 6, very satisfied. Item scores can be summed and an average score is produced. It seems more appropriate to use mean item scores rather than a total score in order to keep the information on each domain available for clinical interventions. Advantages: The LISAT is available in many languages, which makes it suitable for international collaborations. Although it is a relatively short questionnaire, it assesses life satisfaction in several domains, which can provide the information necessary for clinical interventions. Its conciseness and simple coding system are also advantages for research and surveys. It is generic and can be applied for comparisons between groups, as it holds no bias due to specific disability (Post et al. 1998). It has already been used in the field of SCI (Post et al. 1998, 1999; Kennedy et al. 2006, 2006; Woolrich et al. 2006, Lund et al. 2007). Limitations: Depending on when the test is administered with respect to discharge, the questions targeting vocational situation may or may not have missing data. Potential ceiling effects can be expected, as mean scores of ~5 were reported for some life dimensions (e.g. Post et al. 1998). Although the LISAT is beyond the first stages of development, its psychometric testing in the field of SCI remains limited. Interpretability: Scores can be seen as meaningful as they represent satisfaction in different domains of life. Norms have not been developed per se, but a certain level of comparability exists among the studies using the LISAT and amongst the various populations reported (including SCI). Acceptability: The LISAT can be completed in approximately 5 minutes; however, a few extra minutes may be required to clarify the meaning of terms such as vocational and leisure situation. It has been validated in 8 languages (Conway et al. 2000). Feasibility: No equipment or training is necessary to use the LISAT. A copy of the tool can be obtain in the Fugl-Meyer et al. (1991) article. Clinical Summary: The LISAT provides meaningful information for clinical and research purposes in the field of SCI. To date, it has been used in several studies involving a SCI population. Its psychometric properties have been partially tested in different groups; however, there is limited information for SCI populations (e.g. no data on test-retest reliability), which remains its most important limitation. Psychometric Summary
Validity Responsiveness Results Rigor Results Floor/ceiling Construct = ++ Criterion= ++ Discriminant= + Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency Rigor ++ Rigor +++ Reliability Results IC= ++

25-112

25.5 Quality of Life 25.5.2 Quality of Life Index (QLI, Ferrans & Powers) The QLI was designed to measure subjective quality of life in terms of satisfaction within different life domains. It originates from Flanagans perception of life satisfaction, which holds that two aspects, importance and satisfaction, must be addressed when measuring QOL (Ferrans & Powers 1998). Importance ratings are used to weight the satisfaction responses, such that scores reflect the respondents satisfaction with the aspects of life they value. Items that are rated as more important have a greater impact on scores than those of lesser importance. The original QLI (Ferrans & Powers 1985) is comprised of 32 items within 4 domains: health and functioning, psychological/spiritual, social and economic, and family. A SCI version has been developed with 37 items (May & Warren 2001). Procedure: The scales (satisfaction and importance) are on a 6-point Likert scale, ranging from 1, very dissatisfied (very unimportant), to 6, very satisfied (very important). Five scores are generated (i.e. total and 4 domains) on a 0 - 30 scale and scoring instructions are available on the instrument website (Ferrans & Powers 1998). Advantages: The QLI is a suitable tool when one aims at having information on various aspects of life satisfaction. It has adequate psychometric properties for different populations and scores can be compared across populations (Ferrans & Powers 1985; 1992). Limitations: The same total score can reflect two very different QOL profiles. The scoring information seems to be relatively complex and is greatly facilitated by computer assistance. The domains of QOL that are addressed were pre-selected and a uniquely important life dimension for a person may not be included. Psychometric properties for SCI populations remain to be established, particularly with respect to test-retest reliability. Interpretability: Scores represent the satisfaction with different aspects of life. Norms are available for the general population, as well as different groups with disabilities (Ferrans & Powers 1992). Acceptability/ Feasibility: The QLI can be administered in an interview or by client self-report. It takes about 10 minutes to complete and no special training is required. The QLI is a copyright instrument that can be used (no charge) in non-profit research or clinical practice and copies can be downloaded from the QLI website http://www.uic.edu/orgs/qli/. Clinical Summary: The QLI can provide good information to guide interventions on an individual basis. For that purpose, it may be advisable to use the two scales independently in order to establish the precise importance and satisfaction of the specific life domains. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling N/A N/A ++ Construct = +++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-113

25.5 Quality of Life 25.5.3 Quality of Life Profile for Adults with Physical Disabilities (QOLP-PD) The QOLP-PD has been designed to offer a new approach to measuring QOL that is grounded in and congruent with the perspective and experience of people with disabilities. It has been based on the Center for Health Promotion (CHP) Quality of Life model that views QOL as arising out of the ongoing relationship between the person and his/her environment (Renwick & Brown 1996). In this sense, CHP addresses concepts similar to various disability models (e.g. ICF, DCP). The QOLP-PD is comprised of 102 items classified into the 3 CHP domains: being, belonging, and becoming. Procedure: The items in the 3 domains are grouped into 9 sub-scores. All items are rated on a 5-point scale for satisfaction and importance, ranging from 1 (not at all satisfied/important) to 5 (extremely satisfied/important). Overall scores are made more comprehensible by subtracting 3, leading to a range of scores from negative 10 (not at all satisfied/extremely important issues) to positive 10 (extremely satisfied/extremely important issues). Advantages: The QOLP-PD comes from a strong conceptual model (CHP-QOL; see Renwick & Brown 1996). It is applicable across a wide range of disabilities and it can provide information for clinical interventions (Renwick et al. 2003). Limitations: The major limitation is the fact that this instrument is in the early stages of development with few documented psychometric characteristics. Other limitations may be similar to those of the Quality of Life Index (QLI), as the measurement approaches are similar. Interpretability: Being in the early stages of development, the meaningfulness of scores, the definitions and classifications of the results and norm-based scores are undetermined. Acceptability/ Feasibility: Owing to the 102 items that must be assessed on 2 scales, the QOLP-PD is a lengthy instrument compared to some others already available. For a copy of the tool, contact the author, Rebecca Renwick, at r.renwick@utoronto.ca. It is currently available in English. Clinical Summary: The QOLP-PD is a promising instrument that can provide good information to support interventions on an individual basis. Further testing is necessary prior to appraising its usefulness. Psychometric Summary:
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling + IC +++ + Construct= + , ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency

25-114

25.5 Quality of Life 25.5.4 Quality of Well Being Quality of Well Being (QWB) is a preference measure that was designed to measure health related quality of life (Andresen et al. 1999). It was developed based on theory from the General Health Policy Model which incorporates the concepts of mortality, morbidity, the preference of an individual for a certain health state and the duration in that particular health state. The QWB self-administered (QWB-SA) version combines three scales (mobility; physical activity and social activity) with a measure of symptoms/problems. It contains 71 questions. The self-administered version contains slightly different content and the recall period was decreased from six days to three days to reduce recall bias. Procedure: The original version of the QWB was designed to be interviewer administered and there is now a self-administered version. The QWB-SA score is calculated by subtracting from 1.0 the combination of the maximum weighted symptom/problem item and the weights associated with mobility, social activity and physical function. An overall utility score is calculated between 0.0 and 1.0; where 0.0 represents death and 1.0 represent perfect health. Advantages: The QWB-SA can produce utility values which can be used in economic analyses. The utility is a generic measure and so it is easy to compare utilities of different health conditions. The score combines multiple types of information into one summary score which can be useful in statistical analyses. The QWB-SA correlates well with other health related tools. Limitations: Since the QWB-SA combines all of the information into one score, the amount of specific information is lost (i.e. it is not possible to obtain just information on mobility). It does not also capture the unique needs of individuals with SCI since it was designed as a generic measure. Research has also indicated that not all preference-based measures produce equivalent utility values. There has been a considerable amount of research assessing the psychometric properties of the QWB-SA in the general population and in many health states, but very little work has been done to establish reliability, validity, and responsiveness in individuals with SCI (Andresen et al. 1999). Interpretability: The QWB-SA provides an overall utility value which represents the preference an individual places on their specific health state, scored between 0.0 and 1.0. Data exists on numerous health conditions for example community dwelling older adults have a utility value between 0.70-0.75 and individuals with SCI were reported to be 0.55 (Andresen et al. 1999). Acceptability: The QWB-SA is reported to be easier to complete compared to the original QWB measure (Andresen et al. 1999). The QWB-SA is available in various languages. It is not recommended to complete the QWB-SA by proxy. Feasibility: Information on the QWB and the QWB-SA can be obtained from the UCSD Health Outcomes Assessment Program, http://www.medicine.ucsd.edu/fpm/hoap/. The QWB-SA is reported to take approximately 10 minutes to complete. A copy of the User Manual can be obtained on-line and a copyright agreement must be signed before a copy of the tool can be obtained. Depending on the purpose for using the QWB-SA, a fee may be charged. A webbased version of the QWB-SA was scheduled to be ready in 2004. Clinical Summary: The QWB-SA is a preference-based measure that has been used in individuals with SCI. It can provide information on health related quality of life and produces a utility value which can be used to calculate quality adjusted life years required for economic analyses. To date, very little research has been conducted on the use of preference based measures in individuals with SCI and their validity still needs to be determined. Psychometric Summary
Reliability Validity Rigor Results Rigor Results Rigor N/A N/A ++ Construct + N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information Responsiveness Results Floor/ceiling N/A N/A

25-115

25.5 Quality of Life 25.5.5 Qualiveen Qualiveen was developed as a disease specific quality of life measure for individuals with SCI who have urinary disorders that could be used in international multi-centre trials (Costa et al. 2001). The tools were developed by a multi-disciplinary group of experts and the questions were derived based on the literature and individuals with SCI. There are 30 items which are part of four scales: limitations (9 items); constraints (8 items); fears (8 items); and feelings (5 items). The Qualiveen was originally developed in French and translated in English. Procedure: The Qualiveen can be administered by interviewer or be self-administered. The questionnaire is based on a 5 point Likert scale. Each of the four scales are scored from 0 to 100, where lower scores indicated a better quality of life (i.e. no limitations, fears, constraints, or negative feelings) and higher scores indicate poorer quality of life. Advantages: The Qualiveen provides detailed information regarding the impact on urinary disorders which was developed specifically for individuals with SCI (Costa et al. 2001). There were no ceiling or floor effects in the initial study. Limitations: The Qualiveen provides a disease specific perspective on measuring quality of life which has traditionally measured more globally (Costa et al. 2001). A limitation of disease specific measures is that it is not possible to compare results to other patient populations. Quality of life is a very broad and complex concept and it may be difficult to attribute the urinary disorders to an individuals overall quality of life. No information was provided on how the English version was translated from the French version. More research is needed to compare it to other quality of life measures and to assess if it is responsive before being used in clinical trials. Interpretability: The four scales provide information on quality of life for individuals with urinary disorders. Only data is provided from one study, so no normative data exists. Acceptability: The Qualiveen was developed with input from individuals with SCI. Individuals reported that it was easy to understand and was comprehensive (Costa et al. 2001). Feasibility: The Qualiveen is easy to administer but no details are provided on the scoring. Qualiveen is in the process of getting a pending registration trade mark of Coloplast and to obtain a copy of the questionnaire the primary author Dr. Pierre Costa should be contacted at Pierre.costa@chu-nimes.fr. Since it is still in the pilot phase it would be important to check to see if there have been any modifications to the questions or the scoring. Clinical Summary: The Qualiveen is a quality of life tool designed to assess issues pertaining to urinary disorders specifically for individuals with SCI. It would be relevant to administer it to individuals living in the community to understand the impact of urinary issues but it is likely not measuring the same concept as in other quality of life measures which assess life satisfaction and well-being. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling TR +++ ++ Construct ++ N/A N/A ++ IC +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency Rigor ++

25-116

25.5 Quality of Life 25.5.6 Satisfaction with Life Scale (SWLS, Deiner Scale) The SWLS was designed to address the concept of life satisfaction as a whole and thus, to reflect a global perspective of the individuals values rather than to assess satisfaction with subdimensions of life (Diener et al. 1985). Conceptually, SWLS measures subjective QOL and in particular, the reaction to the discrepancy or balance between ones life achievements and expectations. SWLS was developed using a classical test construction approach, in which an initial item pool was subsequently reduced to a smaller collection of items. The current version consists of 5 statements, scored on a 7-point Likert scale, ranging from strongly disagree (1) to strongly agree (7). Procedure: A global score (5 35) is computed by summing the scores of each question. No reports have been presented wherein the scores of a single question were used. Advantages: SWLS is a suitable tool when one aims to evaluate subjective QOL specifically. It is generic, in that it holds no bias due to particular disability (e.g. SCI). It has adequate psychometric properties across various populations and scores can be compared between these populations (see Pavot & Diener 1993 for review). Limitations: SWLS lacks specificity regarding life domains and it does not provide any information on the source of potential dissatisfaction. Furthermore, it may not be useful for guiding clinical intervention and reliability with SCI groups is relatively weak compared to other populations (Dijkers 1999). Interpretability: Scores represent a global perspective of life satisfaction. Norms/profiles are available for a SCI population, other disability populations and non-disabled populations. It is available in multiple foreign languages. Acceptability: The SWLS can be completed in less than 5 minutes. The items on the questionnaire present no potential discomforts. Feasibility: No equipment or specific training is required to administer the SWLS. An online pdf version of the SWLS can be obtained from http://www.ppc.sas.upenn.edu/lifesatisfactionscale.pdf. Clinical Summary: Overall, the SWLS provides global information on life satisfaction. It is useful for drawing general profiles in various populations and thus, it is an appropriate tool for research purposes or epidemiological databases (e.g. the US National SCI Database). Its use in clinical settings may be less useful, in that it does not establish appropriate interventions; however, it does document the overall appreciation of ones life. Psychometric Summary:
Reliability Validity Responsiveness Results Rigor Results Rigor Results Floor/ceiling IC = +++ +++ Construct= ++ N/A N/A N/A TR= ++ Concurrent= +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency Rigor ++

25-117

25.5 Quality of Life 25.5.7 The Short Form 12 (SF-12) and Short Form 36 (SF-36) The SF-36 (Ware & Sherbourne 1992) is a generic health status measure that has been translated into various languages and is used world-wide. It was designed to be applied to all health conditions and to assess general health concepts, such as functional status and well-being. The SF-36 contains 36 items covering eight domains: physical functioning, role limitations due to physical health problems, bodily pain, general health, vitality, social functioning, role limitations due to emotional problems and mental health. The SF-12 was introduced as a shorter alternative to the SF-36 for use in population studies (i.e. large sample sizes) and includes one or two items from each of the eight domains. Procedure: The SF-36 and SF-12 can be administered by the interviewer or the client. The scoring is norm-based, with a general population mean score of 50 and a standard deviation of 10. Higher scores indicate higher levels of health. The SF-12 is scored using two summary scores, a physical and a mental component score, which are norm based (the SF-36 can also be scored in this manner). Advantages: The SF-36 and SF-12 are the most widely used measures of health status and allows the evaluation of various patient populations (McHorney et al. 1994). Economic methods have been applied to the SF-36 and the data can be used to complete a new preference based measure, the SF-6D, which has the advantage of being able to obtain utility values needed to report quality adjusted life years (Brazier et al. 2002). Limitations: Since the SF-36 and SF-12 were designed to be generic, some of the walking/stair climbing questions are not applicable to individuals with SCI and thus, it has been suggested that the wording of these questions be changed from walking/climbing to going (Luther et al. 2006). Another limitation is the differing interpretations of health as distinct or equivalent to disability. Interpretability: There is published data and norms available for most health conditions as well as for the general population (in Canada and the United States). Further research is needed for the establishment of psychometric properties of the SF-36 and SF-12 for SCI populations. Acceptability: The SF-36 requires 5-10 mins to complete and the SF-12 requires 2-4 mins. Feasibility: The SF-36 and SF-12 is easy to administer and the manuals are very informative. Permission to use the tools must be obtained from Quality Metric at www.qualitymetric.com and this incurs a cost. The SF-36 and SF-12 have been translated into various languages. Alternate versions are available (e.g. 1- and 4-week recalls). Clinical Summary: The SF-36 and SF-12 are the most widely used health surveys. These tools have been used extensively to discriminate, evaluate and predict outcomes in various health conditions; however, more work is required to study the validity of the questions and the proposed modifications to the questions for a SCI patient population. Psychometric Summary
Reliability Rigor +++ ++ Results IC = +++ TR = +++ Inter O = ++ Rigor +++ Validity SF-36 Results Construct ++** Discriminant ++ Responsiveness Rigor +++ Results +++ Floor/ceiling +*

SF-12 ++ Construct ++** ++ +++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency; TR=testretest; InterO=interobserver. *ceiling / floor effects were noted in some scales in SF-36 V1 when reporting the scores using 0-100, however, the scales on the role physical and role emotional items were changed from dichotomous to a Likert scale in V2 which should reduce the floor and ceiling effects. No floor and ceiling effects are evident using the MCS and PCS. Other studies showed both floor and ceiling effects for all subscales of the SF-36. **since there is no gold standard to compare to the SF-36, authors tested convergent / divergent validity using hypotheses, this was classified as construct validity as per the Stroke recommendations. Some hypotheses were also tested using ANOVA (F-test). Also results were included that compared the SF-36 to QWB, BFSS, IADL, WHOQOL, CESD 10 and 20, and the psychological functioning subscale to the BPI and GCP. The SF-12 was compared to the BRFSS, QWB, and the IADL.

25-118

25.5 Quality of Life 25.5.8 The Sickness Impact Profile 68 (SIP 68) The Sickness Impact Profile is a generic health status measure. The original version contains 136 items (Bergner et al. 1981). The length of the measure is considered a barrier to using it and thus, a modified version containing 68 items (SIP 68) was developed (de Bruin et al. 1994). This measures physical, mental and social aspects of health-related functioning in 6 subscales: somatic autonomy, mobility control, mobility range, social behavior, emotional stability, and psychological autonomy/communication. The SIP 68 contains statements regarding behavior sickness impact and the individual is asked to respond by checking items that describe their health status. Procedure: The SIP 68 can be administered by the interviewer or the client (i.e. self-report). All items are scored dichotomously (no=0, yes=1). The items reported as yes are used to calculate the scores and higher scores indicate more health-related behavioral problems (i.e. worse health state). The SIP-68 can be reported as an overall total score, three dimension scores (physical, psychological and social) or six sub-scale scores. The questions regarding walking are not relevant to wheelchair-dependent individuals and a scoring modification is proposed in such cases for a yes response to the item I cannot walk at all, all 7 items related to walking are scored positively (Post et al. 1996). Advantages: The SIP 68 is a commonly used health status measure and it is possible to compare results with various patient populations, including those with SCI (Post et al. 2001). Limitations: Floor effects (i.e. reflecting poor health) have been reported for the mobility control scale and ceiling effects (i.e. no reported problems) for the emotional stability and psychological autonomy/communication scales. The evidence on the psychometric properties of the SIP 68 for a SCI population is limited and more research is needed to assess reliability and responsiveness. Interpretability: The scores provide an assessment of health behavior problems. There is published data and norms available for a SCI population, as well as for individuals with other disabilities (Post et al. 2001). Acceptability: The SIP 68 requires approximately 15-20 minutes to complete. Feasibility: The SIP 68 is easy to administer. It is available in English and Dutch, but the administration guidelines are published in Dutch. The SIP 136 version can be obtained from the Medical Outcomes Trust at: http://www.outcomes-trust.org/instruments.htm and the SIP 68 is available in the literature (de Bruin 1994). Clinical Summary: The SIP 68 has been used to assess health-related quality of life of individuals living in the community. Modifications made to the scoring of the walking/mobilityrelated items in the SIP 68 make it a suitable tool for this patient population. Psychometric Summary
Validity Responsiveness Rigor Results Rigor Results Floor/ceiling +++ Construct ++ N/A N/A ++ ++ Predictive +* Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency * Note: Predictive validity was assessed by determining that social functioning and psychological functioning from the SIP 68 were significant predictors of life satisfaction. Rigor +++ Reliability Results IC +++

25-119

25.5 Quality of Life 25.5.9 WHOQOL (BREF) The short version of the World Health Organization Quality of Life Assessment (WHOQOLBREF) has been developed using data from the field trial version of the WHOQOL-100 (WHOQOL Group 1998). It can be used in situations in which time is restricted or the burden placed upon the respondent must be minimized (WHOQOL Group 1998). This is an instrument that conceptually fits with the WHO definition of QOL and substantial effort has been put forth to properly operationalize the sub-concepts (various aspects of life) included in the instrument (WHOQOL Group 1998). WHOQOL-BREF is a self-report questionnaire that is comprised of 24 items grouped into 4 domains of QOL (physical health, psychological health, social relationships, and environment) and 2 items which measure overall QOL and general health. Procedure: The instrument uses a 5-point Likert scale (e.g. 1, Not at all 5, Completely). The respondents express how much they have experienced the items in the preceding 2 weeks. All domain scores are reported between 4 and 20 (mean scores for each multiplied by 4). Advantages: WHOQOL-BREF is a suitable tool when the goal is to acquire information on various aspects of life satisfaction; however, it also includes 2 questions targeting overall QOL and general health. Its conceptualization is strong and some psychometric properties were tested with different populations (Skevington et al. 2004). Furthermore, it can be used to compare results across populations (cross-cultural validity) (Skevington et al. 2004). Limitations: Lack of information on concurrent validity, test-retest reliability, and responsiveness. Interpretability: Scores represent ones personal experience and satisfaction regarding various aspects of life. Norms are available for different groups of people. Acceptability: The WHOQOL-BREF can be completed within a few minutes. Feasibility: No equipment or specific training is required to administer it. Copies can be downloaded from the WHO website. Clinical Summary: WHOQOL-BREF is among the rare instruments that can provide data for research and clinical purposes. Although it is a relatively brief instrument, its structure allows one to acquire specific information covering many aspects of life. The adequate cross-cultural validity makes it suitable for use in multinational collaborative research (Skevington et al. 2004). Psychometric Summary:
Rigor +++ ++ Reliability Results IC = ++ TR = +++ InterO = +++ Rigor +++ ++ Validity Results Discriminant = ++ Criterion = ++ Construct = ++ Rigor ++ Responsiveness Results Floor/ceiling ++ +++

Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; S = Statistically significant; NS = Not statistically significant; TR=Test re-test; IC=internal consistency, InterO=interobserver reliability

25-120

25.5 Quality of Life Quality of Life References Andresen E, Meyers A. Health-related quality of life outcomes measures. Arch Phys Med Rehabil 2000;81:S30-45. Andressen EM, Fouts BS, Romeis JC, Brownson CA. Performance of health related quality of life instruments in a spinal cord injured population. Arch Phys Med Rehabil 1999;80:877884. Anton HA, Miller WC, Townson AF. Measuring fatigue in persons with spinal cord injury. Arch Phys Med Rehabil 2008; 89: 538-542. Baker F, Intagliata J. Quality of life in the evaluation of community support systems. Ev Prog Plan 1982;5:69-79. Bergner M, Bobbit R, Carter W, Gilson B. The Sickness Impact Profile: Development and Final Revision of a Health Status Measure. Med Care 1981;8:787-805. Chan SC, Chan AP. The validity and applicability of the Chinese version of the Quebec User Evaluation of Satisfaction With Assistive Technology for people with spinal cord injury. Assist Technol 2006; 18: 25-33. Chapin M, Miller S, Ferrin J, Chan F, Rubin S. Psychometric validation of a subjective wellbeing measure for people with spinal cord injuries. Disabil Rehabil 2004;26:1135-1142. Consortium for Spinal Cord Medicine. Outcome following traumatic SCI: Clinical practice guidelines for health-care professionals. Paralyzed Veterans of America: Washington, DC, 1999. Conway K, Chaput M, Fugl-Meyer KS, Fugl-Meyer A, Kubin M. Linguistic validation of the FuglMeyer Life Satisfaction Checklist (LiSat 8) into 8 languages. Qual Life Res 2000;9:41. Corrigan J. Satisfaction with Life Scale. The Center for Outcome Measurement in Brain Injury; 2000. (http://www.tbims.org/combi/swls) Costa P, Perrouin-Verbe B, Colvez A, Didier J, Marquis P, Marrel A, Amarenco G, Espirac B, Leriche A. Quality of life in spinal cord injury patients with urinary difficulties. Development and validation of qualiveen. Eur Urol 2001;39:107-113. De Bruin A, Diederiks J, De Witte L, Stevens F, Philipsen H. The Development of a Short Generic Version of the Sickness Impact Profile. J Clin Epidemiol 1994;47:407-418. Diener E, Emmons RA, Larsen RJ, Griffin S. The Satisfaction With Life Scale. J Pers Assess 1985 ;49:71-75. Dijkers MPJM. Correlates of Life Satisfaction Among Persons With Spinal Cord Injury. Arch Phys Med Rehabil 1999;80:867-876. Dijkers M. Individualization in Quality of Life Measurement: Instruments and Approaches. Arch Phys Med Rehabil 2003;84:S3-S14. Ferrans C, Powers C. Quality of Life Index; 1998. http://www.uic.edu/orgs/qli/index.htm Ferrans C, Powers M. Quality of life index: development and psychometric properties. Adv Nurs Sci 1985;8:15-24. Ferrans C, Powers M. Psychometric assessment of the Quality of Life Index. Res Nurs Health 1992;15:29-38. Forchheimer M, McAweeney M, Tate DG. Use of the SF-36 among persons with spinal cord injury. Am J Phys Med Rehabil 2004;83:390-95. Fugl-Meyer A, Brnholm I-B, Fugl-Meyer K. Happiness and Domain-Specific Life Satisfaction in Adult Northern Swedes. Clin Rehabil 1991;5:25-33. Graf C. The Lawton Instrumental Activities of Daily Living Scale. American Journal of Nursing 2008;108:52-62. Jang Y, Hsieh C, Wang Y, Wu Y. A validity study of WHOQOL-BREF assessment in persons with traumatic spinal cord injury. Arch Phys Med Rehabil 2004;85:1890-1895. Kalpakjian CZ, Scelza WM, Forchheimer MB, Toussaint LL. Preliminary reliability and validity of a Spinal Cord Injury Secondary Conditions Scale. J Spinal Cord Med 2007; 30: 131-139. 25-121

25.5 Quality of Life Kennedy P, Lude P, Taylor N. Quality of life, social participation appraisals and coping post spinal cord injury: A review of four community sample. Spinal Cord 2006;44:95-105. King JT,Jr, Roberts MS. Validity and reliability of the Short Form-36 in cervical spondylotic myelopathy. J Neurosurg 2002;97:180-185. Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 1969;9:179-85. Lee BB, King MT, Simpson JM, Haran MJ, Stockler MR, Marial O, Salkeld G. Validity, Responsiveness, and Minimal Important Difference for the SF-6D Health Utility Scale in a Spinal Cord Injured Population. Value Health 2008. Lin MR, Hwang HF, Chen CY, Chiu WT. Comparisons of the brief form of the World Health Organization Quality of Life and Short Form-36 for persons with spinal cord injuries. Am J Phys Med Rehabil 2007; 86: 104-113. Luther SL, Kromrey J, Powell-Cope G, Rosenberg D, Nelson A, Ahmed S, Quigley P. A pilot study to modify the SF-36V physical functioning scale for use with veterans with spinal cord injury. Arch Phys Med Rehabil 2006; 87: 1059-1066. May L, Warren S. Measuring quality of life of persons with spinal cord injury: Substantive and structural validation. Qual Life Res 2001;10:503-515. May L, Warren S. Measuring quality of life of persons with spinal cord injury: external and structural validity. Spinal Cord 2002;40:341-350. McHorney C, Ware JJ, Lu R, CD S. The MOS 36-Item Short-Form Health Survey (SF-36): III. Tests of Data Quality, Scaling Assumptions, and Reliability Across Diverse Patient Groups. Med Care 1994;32:40-66. Melin R, Fugl-Meyer K, Fugl-Meyer A. Life Satisfaction in 18-64 Year Old Swedes in Relation to Education, Employment Situation, Health and Physical Activity. J Rehabil Med 2003;35:8490. Miller WC, Anton HA, Townson AF. Measurement properties of the CESD scale among individuals with spinal cord injury. Spinal Cord 2008; 46: 287-292. Nanda U, McLendon P, Andresen E, Armbrecht E. The SIP68: An Abbreviated Sickness Impact Profile for Disability Outcomes Research. Qual Life Res 2003;12:593-595. Pavot W, Diener E. Review of the Satisfaction with Life Scale. Psychol Assess 1993;5:164-172. Post M, De Bruin A, De Witte L, Schrijvers A. The SIP68: A Measure of Health-Related Functional Status in rehabilitation Medicine. Arch Phys Med Rehabil 1996;77:440-445. Post M, De Witte L, Schrijvers A. Quality of life and the ICIDH: Towards an Integrated Conceptual Model for Rehabilitation Outcomes Research. Clin Rehabil 1999;13:5-15. Post M, De Witte L, Van Asbeck F, Schrijvers A. Predictors of Health Status and Life Satisfaction of People with Spinal Cord Injuries. Arch Phys Med Rehabil 1998;79:395-402. Post MW, Gerritsen J, Diederikst JP, DeWittet LP. Measuring health status of people who are wheelchair dependent: validity of the Sickness Impact Profile 68 and the Nottingham Health Profile. Disabil Rehabil 2001;23:245-253. Post M, Noreau L. Quality of life after spinal cord injury. J Neurol Physical Therapy 2005;29:139-146. Post M, Ros W, Schrijvers A. Impact of Social Support on health Status and Life Satisfaction in People with a Spinal Cord Injury. Psychology and Health 1999;14:679-695. Post M, Van Dijk A, Van Asbeck F, Schrijvers A. Life Satisfaction of Spinal cord Injured Compared to a Population Group. Scand J Rehab Med 1998;30:23-30. Raichle KA, Osborne TL, Jensen MP, Cardenas D. The reliability and validity of pain interference measures in persons with spinal cord injury. J Pain) 2006; 7: 179-86 (30 ref). Renwick R, Brown I. The Centre for Health Promotion's conceptual approach to quality of life: being, belonging, and becoming. In: Renwick R, Brown I, Nagler N (ed). Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications. Sage, Thousand Oaks, CA, 1996, p 75-86. 25-122

25.5 Quality of Life Renwick R, Nourhaghighi N, Manns P, Lalibert Rudman D. Quality of life for people with physical disabilities. Int J Rehab Research 2003;26:279-287. Scherer M, Cushman L. Predicting satisfaction with assistive technololgy for a sample of adults with new spinal cord injuries. Psychol Rep 2000;87:981-987. Schnherr MC, Groothoff JW, Mulder GA, Eisma WH. Participation and satisfaction after spinal cord injury. Spinal Cord 2005;43:241-248. Skevington S, Lofty M, O'Connell K. The World Health Organisation's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res 2004;13:299-310. Ware JJ, Sherbourne C. The MOS 36-Item Short-Form Health Survey (SF-36). Med Care 1992;30:473-483. Wood-Dauphinee S, Exner G, Bostanci B,Exner G, Glass C, Jochheim KA, Kluger P, Koller M, Krishnan KR, Post MW, Ragnarsson KT, Rommel T, Zitnay G, SCI Consensus Group. Quality of Life in Patients with Spinal Cord Injury: Basic Issues, Assessment, and Recommendations. Restor Neurol Neurosci 2002;20:135-149. WHOQOL-BREF website: http://www.who.int/evidence/assessment-instruments/qol WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): Development and general psychometric properties. Soc Sci Med 1998;46:1569-85. WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 1998;28:551-558. World Health Organization. International Classification of Functioning, Disability and Health. Geneva; 2001.

25-123

25.6 Environment Disability is no longer understood as a feature of the individual, but rather as the outcome of an interaction of the person with a health condition and the environmental factors. The environment consists of the physical, social and attitudinal circumstances in which people live and conduct their lives. Environmental factors are external to the individual and can have a positive or negative influence on a person's participation as a member of society, on performance of activities, or on a person's body function or structure. Facilitators are features of the environment that have a positive effect on disability while barriers are features of the environment that have a negative effect on disability. There are very few measurement tools designed to evaluate the environment and its effect on an individuals life. The physical environment is the most commonly assessed aspect that is evaluated. In this section we feature two environmentally oriented tools that have been validated with individuals with SCI. The outcome measures reviewed under this category include: 25.6.1 Assistive Technology Device Predisposition Assessment (ATD-PA) .......................25-125 25.6.2 Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) ...25-126 Environment References ...................................................................................................25-127

25-124

25.6 Environment 25.6.1 Assistive Technology Device Predisposition Assessment (ATD-PA) The Assistive Technology Device Predisposition Assessment (ATD-PA) examines consumers subjective satisfaction with achievements in a variety of functional areas. Consumers are asked to characterize aspects of functioning, temperament, lifestyle, and views of a particular assistive device (Scherer & Cushman 2001). The device has 63 items, divided into 2 domains. Procedure The ATD-PA is a self report tool which can be applied through interview techniques. Domain one contains 53 items. It is designed to be administered per individual across several time points. It is divided into four sections. Section A (items 1-9) asks respondents to rate their current capabilities in nine functional areas according to a five-point scale (1=poor to 5=excellent). All items in Sections B and C comprise the QOL subset. Each item is rated on a five-point scale (Section B: 1=not satisfied; 5=very satisfied; Section C: 1=strongly disagree; 5=strongly agree). Section D contains 33 statements about temperament and psychosocial support. Patients check those which apply to them. Domain two is designed to be administered for each assistive technology device used across several time points. It consists of 10 items related to the expected benefit from a device. Patients rate each item on a five-point scale how based on how much the statement applies to them (1=does not apply to me; 5=definitely applies to me) (Scherer and Cushman 2001). Advantages: The ATD-PA has been shown to be a reliable measure and to have adequate content and criterion-related validity in the SCI population (Scherer & Cushman 2001). It encourages consumer participation in the process of developing and setting goals and helps the consumer to better understand her or his own needs and interests (Scherer & Cushman 2002). The ATD-PA is useful when a consumer has a complicated case and is a good tool for assessing a clients story with assistive technology. Limitations: Additional longitudinal studies with larger numbers of subjects are needed (Scherer & Cushman 2001). The tool is very comprehensive and as such has considerable burden. Interpretability: Scores from the quality of life section provide information regarding the consumers subjective quality of life. Higher scores are indicative of better quality of life. No information is available regarding norms or meaningful cut scores. Acceptability: The tool has shown to have criterion and construct validity among a SCI population. The time required to use this tool is considerable. Feasibility: A copy of the ADT-PA as well as instructions on scoring and interpretation may be purchased from the Institute for Matching Person & Technology, Inc. (http://members.aol.com/IMPT97/MPT.html). Clinical Summary: Together with functional data, the ATD-PA has the potential to contribute to the formulation of consumer-directed needs and goals for rehabilitation. For persons with new spinal cord injury who indicate a predisposition to poor assistive technology use, the ATD-PA can be a measure to identify obstacles to AT use early on in the course of rehabilitation. Subsequent clinical steps may then be taken to prevent AT abandonment or non-use (Scherer & Cushman 2001). Psychometric Summary
Reliability Rigor Results ++ IC +++ Responsiveness Results Rigor Results Floor/ceiling Construct +++ N/A N/A N/A Criterion ++ Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; IC=internal consistency Validity Rigor ++

25-125

25.6 Environment 25.6.2 Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0) The Quebec User Evaluation of Satisfaction with Assistive Technology was designed to evaluate a persons satisfaction with a wide range of assistive technology (AT) (Demers et al. 2002). The first version of the QUEST consisted of 24 items although the user could also add any other items considered important. An item analysis was performed and those items that ranked best in terms of demonstrating optimal measurement performance were included in QUEST 2.0. The current version of the scale includes 12 items that cover two dimensions: satisfaction with the device (8 items) and satisfaction with the service from the vendor/manufacturer (4 items). Procedure: The tool has a self-administration or interview format. Response categories range from 1 (not satisfied at all) to 5 (very satisfied). Advantages: As a generic instrument, it covers both Device and Services components of AT thus, the items may be applied to a wide range of devices (Demers et al. 2002). Comments can be collected with respect to each individual item to provide qualitative information. Simple to use and score. Limitations: Some items relevant to specific pieces of technology or delivery systems may be absent. For example, speed is subsumed within the item effectiveness although it may be considered an important aspect of a powered wheelchairs performance (Demers et al. 2002). Users of the QUEST are invited to add items of their own. These data cannot be included in the Device, Services and total QUEST scores. More reliability tests for the 4-item Services subscale are needed. Reliability and validity studies for SCI have only been conducted with the Chinese version of the QUEST (Chan & Chan, 2006). Interpretability: The QUEST 2.0 yields three scores: Device, Services, and a total QUEST, calculated by summing and then averaging valid responses to assigned items. No information on important cut points or responsiveness (sensitivity to change) is available Acceptability: In the self-administered format, the QUEST 2.0 demands minimal skills to circle or mark the responses on the rating scale and to write comments (Demers et al. 2002). When the interview format is used, some interactive optional material is provided, including a list of 12 satisfaction items printed in large font and an enlarged rating scale displaying the 5-point degrees of satisfaction. Feasibility: Approximately 10-15 minutes are required to complete the QUEST 2.0. The instrument was originally developed in English and French, and it is now also available in Dutch, Swedish, Norwegian, Danish, Chinese, and Japanese. No training is required to use the QUEST. Copies of the English version of the QUEST 2.0 may be purchased from the following website: http://members.aol.com/IMPT97/orderform.html. Clinical Summary: As a clinical tool, the rating scale provides practitioners with a means of collecting satisfaction data to document the real-life benefits of AT and to justify the need for these devices (Demers et al. 2002). Measurement studies for all but the Chinese version of the QUEST are required for the SCI population. Psychometric Summary
Reliability Validity Responsiveness Rigor Results Rigor Results Rigor Results Floor/ceiling ++ IC +++ ++ Construct ++ N/A N/A N/A Note: +++ = Excellent; ++ = Adequate; + = Poor; N/A=Insufficient information; TR=Test re-test; IC=internal consistency

25-126

Environment References Chan SCC and Chan APS. The Validity and Applicability of the Chinese Version of the Quebec User Evaluation of Satisfaction With Assistive Technology for People With Spinal Cord Injury. Asst Technol. 2006;18:25-33. Demers L, Weiss-Lambrou R, Ska B. The Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST 2.0): An overview and recent progress. Technology and Disability 2002;14:101-105. Scherer MJ and Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation 2001; 23: 387-393. Scherer MJ and Cushman LA. Determining the content for an interactive training programme and interpretive guidelines for the Assistive Technology Device Predisposition Assessment. Disability and Rehabilitation 2002; 24: 126-130.

25-127