Principal aspects on

outcome measures in
stroke rehabilitation
Katharina Stibrant Sunnerhagen
Professor

Rehabilitation medicine
Institute for Neuroscience and Physiology,
Gteborg University, SWEDEN

General aims of the talk

9 Why measure?
9 What to measure?
9 How to measure?
9 What to think about when interpreting
others measurements?

Outcomes are the end results of

medical care: what happens to the
patient in terms of palliation, control
of illness, cure or rehabilitation.
Brook et al. Ann Intern Med 1966; 85: 809-17

Why should we assess?

Diagnostics
Prognosis
Quantification
how severely
change over time
assess effects of intervention

Epidemiology

population research (such as the Swedish stroke registry)

planning of healthcare and social services

Admininstrative and legal causes

for reimbursement of services rendered

for ackreditation or other type of quality control

What can we use outcomes for

in the clinic?
Document results of interventions in the
clinic
Develop standardized clinical practices
(such as national guidelines for stroke
care)
Guide clinical decisions regarding care
Improve performance

International Classification of
Functioning, Disability
and Health

ICF

Approved by the World Health Assembly in May 2001

ICF is a classification system not a measure!

Functioning

If we are doing or
making something, we
are functioning.

A disability that means lifelong

impairments in physical and or
psychological funtion, is a functional

limitation

ICF
Different established
instruments can be linked to
the ICF
Items in the instruments can
be coded according to the ICF
New instrument can be
developed in the framework of
ICF

ICF
What to measure
and not
How to measure it

What to measure?
Body function - organ
Activity - person
Participation - societal

When choosing a standardised assessment

(an assessment that has been evaluated

and has norms and standards for the
intended situation)
it is important to determine in what areas it
will be used

Measurement is the process of assigning

numbers to represent quantities of trait,
attribute, or characteristic, or to classify objects

Instrument reliability
biophysiological measure
self-report measure
observational measure

Intrarater reliability
the consistency with which one rater
assigns scores to a single set of
responses on two occasions

Interrater reliability
the consistency of performance
among different raters in assigning
the same scores to the same object
or responses

Intrasubject reliability
test-retest
is dependent on the two
measures earlier

Measurement validity
Construct validity the proof that a particular measure
constructs are consistent with the abstract or theories that
underlies

Face validity whether or not a measures appears to

measuring the intended

Content validity to what extent a measure is a complet

representation of the concept of interest

Criterion validity to what extent the measure is

systematically related to a gold standard

Measurement validity
Sociocultural validity to what extent are
the measures appropriate in the setting

Translation process description

contact with the constructor
independent forward and backward
checked for sociocultural validity
checking against the original
identifying the translation (naming)

Ecological validity

Ecological validity is the degree to which the

behaviors observed and recorded in a study
reflect the behaviors that actually occur in
natural settings.
Can the finding (from a study) be generalized
(or extended) to the "real world".

Stroke specific instruments

Designed for with a specific aim
Better face validity
http://www.strokecenter.org/trials/scales/index.htm

Acute Assessment Scales

Canadian Neurological Scale (CNS)
Glasgow Coma Scale (GCS)
Hemispheric Stroke Scale
Hunt & Hess Scale
Mathew Stroke Scale

Mini-Mental State Examination (MMSE)

NIH Stroke Scale (NIHSS)

Orogozo Stroke Scale

Oxfordshire Community Stroke Project Classification (Bamford)

Scandinavian Stroke Scale

http://www.strokecenter.org/trials/scales/index.htm

Functional Assessment
Berg Balance Scale
Modified Rankin Scale
Stroke Impact Scale (SIS)
Stroke Specific Quality of Life Measure (SS-QOL)
Outcome Assessment
American Heart Association Stroke Outcome Classification
Barthel Index
Functional Independence Measurement (FIMTM)
Glasgow Outcome Scale (GOS)
Health Survey SF-36TM & SF-12TM

http://www.strokecenter.org/trials/scales/index.htm

Assessment refers to the process of

evaluating a patients problems including
recognition, measurement of the problems
and determining their cause and their extent

Stroke Impact Scale;

Duncan P et al 1999

Patient reported outcome

59 items
Divided into 8 domains
SIS

strength
memory
emotion
communication
activities of daily living
mobility
hand function
social participation

ICF

body function
body function
body function
activity
activity
activity
activity
participation

Stroke Impact Scale;

Duncan P et al 1999

Items within the domain are ordered hierachially

based on clinical perception and Rasch analysis
Has a proxy version if needed
A final question assesses the persons global
perception of recovery since onset of stroke
using VAS (0= no recovery -100=full recovery
Chinese for Taiwan, Danish, Dutch for Belgium, Dutch for the Netherlands, English for
Australia, English for New Zealand, English for the UK, French for France, French for
Belgium, French for Canada, German for Germany, German for Austria, German for
Switzerland, Greek, Hebrew, Italian, Japanese, Norwegian, Portuguese for Portugal,
Russian, Spanish for Spain, Spanish for the USA, Swedish, Tagalog, Thai, Turkish

Instrument commonly used for outcome

measures in stroke rehabilitation in Europe
Information from the PRO-ESOR project

Functional Independence Measure (FIM)

Barthel Index
Mini Mental State Exam (MMSE)
Glasgow Coma Scale
National Institute of Health Stroke Scale (NIHSS)
Rivermead Behavioural Memory Test
Motricity Index

Haigh R, Tennant A, Biering-Srensen F et.al. The use of outcome measures in Physical Medicine
and Rehabilitation within Europe. J Rehabil Med 2001: 33:273-278.

Expericence from gathering outcome

measures in Europe
Information from the PRO-ESOR project

9 All common measures are those

administered by professionals; not
self-completed questionnaires.
9 Remarkably little evidence for the
validity of adaptations and, in some
cases, adapted version unknown!

How to count the measure?

Nominal scale
classsification into categories
infarct-hemorrhage

frequencies

Ordinal scale
the answers are ranked, but we do not know the
width of the scale steps
NIH stroke scale, FIM, Barthel

frequencies, median and percentiles

Interval scale
linear scale where the distance between the varibles
are known
thermometer
Ratio scales
ruler

mean, SD

basically all mathematics and statistics can be used

The awareness on how to count

In principal, scores from ordinal scales should
not be summed
Thus, when using sums in statistical analyses
be aware of the limitations
It is common practice to continue to do so

SCORES
Coded data that represent:

More/less of something
One construct
Ordinal data

MEASURES
Linearized total scores:
Equal units

Same meaning
Interval data

Rasch measurement methods

Convert ordinal data into linear measure
Ensure that the tests we are constructing
are valid and reliable measures
unidimensional scales expressed in equal
units of ability

Activities of daily living (ADL) data, such as the Barthel Index, were treated

as continuous outcomes and mean and standard deviation data were

requested or calculated. We are aware that there is difference of opinion
over how to deal with Barthel data. We have

treated it as an

interval measurement whereas other people prefer to treat

it as ordinal. It is our view that, although from a theoretical viewpoint there
is an issue here, in practice it makes relatively little difference. Outcomes
were analysed as the standardised mean difference and 95% confidence
intervals of the percentage change in these variables.

Bowen A, Lincoln NB, Dewey M. Cognitive rehabilitation for spatial neglect following stroke. The Cochrane
Database of Systematic Reviews 2002, Issue 2. Art. No.: CD003586. DOI: 10.1002/14651858.CD003586

What to think about when interpreting

others measurements?
Be aware that reliable and valid measures
are not to be taken for granted!
Is the version of the measure valid in
that culture of the study and how was it
translated?
How were the measures used and
statistically treated?

Why isnt the same care as we put into

Review of literature
Design of studies
Choice of statistical analysis
also applied to our choice of measures?
(T Bond and C Fox, 2001
Applying the Rasch model. Fundamental measurement in
the human sciences)

Conclusion: Evidence based outcome is

still far away

The intellectual input from sa Lundgren-Nilsson and

Gunnar Grimby is acknowledged!

ks.sunnerhagen@neuro.gu.se