International Journal of Speech-Language Pathology, 2014; 16(1): 82–94

ORIGINAL RESEARCH: GENERAL ARTICLE

The assessment for living with aphasia: Reliability

and construct validity

NINA SIMMONS-MACKIE1, AURA KAGAN2, J. CHARLES VICTOR3,

ALEX CARLING-ROWLAND4, ADA MOK2, JEFFREY S. HOCH5,6,7,
MARIA HUIJBREGTS7,8 & DAVID L. STREINER7,9
1Southeastern Louisiana University, Hammond, LA, USA, 2Aphasia Institute, Toronto, Canada, 3Institute for Clinical
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Evaluative Sciences, Toronto, Canada, 4College of Audiologists and Speech Language Pathologists of Ontario, Canada,
5Keenan Research Centre, Li Ka Shing Knowledge Institute, Toronto, Canada, 6Cancer Care Ontario, Toronto, Canada,
7University of Toronto, Toronto, Canada, 8Kunin Lunenfield Applied Research Unit, Baycrest, Toronto, Canada, and
9McMaster University, Ontario, Canada

Abstract
The Assessment for Living with Aphasia (ALA) is a pictographic, self-report measure of aphasia-related quality-of-life.
Research was undertaken to assess test–re-test reliability, construct validity, and the ability to discriminate aphasia severity.
The ALA was administered to 101 participants with aphasia on two occasions. Test–re-test reliability was evaluated using
For personal use only.

intra-class correlations and internal consistency using Cronbach’s alpha. Three reference measures were administered to
assess construct validity. A focus group reported on ease of administration and face validity. Analysis identified 15 out of
52 rated items for elimination. For the remaining items, test–re-test reliability was excellent for the total score (ICC ⫽ .86)
and moderate-to-strong for a priori domains adapted from the WHO ICF (.68–.83). Internal consistency was acceptable-
to-high. Significant correlations were observed between the ALA and reference tests (SAQOL-39, .72; p ⬍ .001; VASES,
.62, p ⫽ .03; BOSS CAPD, ⫺.69; p ⫽ .008). The language impairment domain discriminated between all aphasia severity
groups, while mild aphasia was different from moderate and severe aphasia in participation and total scores. The ALA was
reportedly easy to administer and captured key aspects of the experience of living with aphasia. Results suggest acceptable
test–re-test reliability, internal consistency and construct validity of the ALA.

Keywords: Aphasia, quality-of-life, assessment, outcome, stroke, communication disorders.

Introduction
In 1948 the World Health Organization (WHO)
defined health as “a state of complete physical, men-
tal and social well-being and not merely the absence
of disease or infirmity” (WHO, 1948). Since that
time the medical field has slowly moved in the direc-
tion of a more holistic focus on the individual and
his or her life context, as opposed to a narrow focus
on disease or disorder (e.g., Hayes & Hodson, 2011;
Joint Commission, 2010; Mezzich, 2011). In the
communication disorders literature this movement
is reflected in an interest in quality-of-life (QoL) and
well-being. For example, Speech Pathology Australia
(SPA) and the American Speech-Language-Hearing
Association (ASHA) have included quality-of-life in
the scope of speech-language pathology practice
(ASHA, 2001; SPA, 2003). Research has recognized
areas associated with quality-of-life after the onset
of aphasia. For example, Cruice Worrall, Hickson,
and Murison (2003) and Cruice, Hill, Worrall, and
Hickson (2010) identified factors such as engaging
in meaningful activities, socializing with others,
and having a positive outlook as aspects of QoL in
aphasia. Additionally, there is increased awareness
that improvements in a clinical setting do not neces-
sarily result in improvements in daily life situations
or life satisfaction; thus, there has been a call for
interventions that positively and directly affect life
quality (Cruice et al., 2003, 2005; Holland &
Thompson, 1998; Kagan & LeBlanc, 2002; LaPointe,
1999; LPAA Project Group, 2000; Ross, 2005; Ross
& Wertz, 2003; Sarno, 2004; Simmons-Mackie,
2000, 2008; Worrall & Holland, 2003). In order to
devise interventions that address QoL, clinicians
must understand the impact of communication dif-
ficulties on the daily lives of clients with aphasia.

Correspondence: Nina Simmons-Mackie, 580 Northwoods Drive, Abita Springs, LA 70420, USA. Email: nmackie@selu.edu
ISSN 1754-9507 print/ISSN 1754-9515 online © 2014 The Speech Pathology Association of Australia Limited
Published by Informa UK, Ltd.
DOI: 10.3109/17549507.2013.831484

Assessment tools are needed to identify and quantify
life quality issues and help establish relevant and
meaningful goals (Cruice et al., 2003; Dalemans, de
Witte, Lemmens, van den Heuvel, & Wade, 2008;
Doyle, 2005; Doyle, Mikolic, Prieto, Hula, Lustig,
Ross, et al., 2004; Engell, Hütter, Wilmes, & Huber
2003; Hilari, Byng, Lamping, & Smith, 2003; Ross
& Wertz, 2003).
Quality-of-life measures
Quality-of-life measures have been developed for
general use (e.g., WHOQoL, WHO, 1998). How-
ever, general QoL tools sample different health out-
comes and many of these fail to capture the
potential treatment outcomes associated with the
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consequences of aphasia. Several tools have been
developed explicitly to measure QoL and/or well-
being of individuals with stroke or aphasia (Doyle
et al., 2004; Engell et al., 2003; Hilari et al., 2003;
Paul, Frattali, Holland, Thompson, Caperton, &
Slater, 2005; Swinburn & Byng, 2006), but these
available tools are either lengthy, communicatively
inaccessible for severe aphasia, focused on stroke
rather than aphasia, or have yet to be subjected to
sufficient psychometric testing for widespread use.
Consequently, QoL is rarely formally evaluated
For personal use only.
among people with aphasia (Simmons-Mackie,
Threats, & Kagan, 2005).
Development of the Assessment for Living with Aphasia
The Assessment for Living with Aphasia (ALA)
(Kagan, Simmons-Mackie, Victor, Carling-Rowland,
Hoch, Huijbregts, et al., 2011) was developed in
order to address the need for a communicatively
accessible, psychometrically sound, aphasia-related
QoL measure. It is a pictographic, self-report mea-
sure designed to measure outcomes associated with
the impact of aphasia on daily life.
Conceptual framework of the ALA. The ALA is
based on Living with Aphasia: Framework for Out-
come Measurement (A-FROM) (Kagan, Simmons-
Mackie, Rowland, Huijbregts, Shumway, McEwen,
et al., 2008). A-FROM is a user-friendly framework
designed to guide and organize thinking related to
life with aphasia. A-FROM is adapted from the
World Health Organization International Classifica-
tion of Functioning, Disability, and Health (ICF)
(WHO, 2001). The ICF defines health in terms
of Body Structure and Function, Activities and
Participation, and Personal and Environmental Fac-
tors. Body Functions include the physiological
and mental functions of the body, while body struc-
tures refer to anatomical elements such as limbs
or muscles. Activities refer to particular actions or
tasks performed by a person. Participation refers to
involvement in personally relevant life situations. In
Assessment for living with aphasia 83
addition, the ICF recognizes the influence of the
external environment including barriers and facilita-
tors that exist outside of the person (environmental
factors), as well as intrinsic factors such as gender,
culture, or age (personal factors).
The A-FROM adaptation of the ICF is useful for
understanding the impact of aphasia at a variety of
levels and serves as the scaffold upon which the ALA
was designed (Simmons-Mackie & Kagan, 2007).
A-FROM ties the ALA to the conceptual underpin-
nings of the ICF and includes the key domains
of ICF in a simplified schematic (Figure 1). In
A-FROM, body function is represented as language
and related impairments, environment focuses on
the communication environment, and the participa-
tion domain (relationships, roles, and activities
of choice) includes what the ICF calls activities.
In addition, the definition of personal factors is
expanded to explicitly include psychosocial aspects
such as identity or self-esteem. Unlike the ICF,
A-FROM includes QoL as a dynamic overlap of
domains for people affected by aphasia. Develop-
ment of A-FROM is grounded in the literature, the
ICF, extensive experience in working with people
affected by aphasia, and, most important, the needs
and opinions expressed in multiple focus groups by
various stakeholders (as described in Kagan et al.,
2008). Questions on the ALA were designed to
address the A-FROM adapted ICF domains of lan-
guage impairment, participation, personal factors,
and environmental factors within a dynamic interac-
tion referred to as “living with aphasia”.
Self-report rating. One of the earliest decisions in
developing the ALA was to provide a means for peo-
ple with aphasia to report their own perspectives on
their lives. QoL is a highly subjective concept and
most agree that individuals should be the primary
informants regarding their own life quality (WHO,
1998). In a discussion of self-report measures, Doyle,
McNeil, Hula, and Mikolic (2003, p. 292) suggest
that “it appears that patient report measures of health
status and SWB [subjective well-being] provide
unique and important information not addressed by
other kinds of assessments”. However, there are
potential drawbacks to self-report measures (Newell,
Girgis, Sanson-Fisher, & Savolained, 1999). For
example, some respondents might encounter diffi-
culty in comprehending the intent of questions or
answering questions (Dalemans, Wade, van den
Heuvel, & de Witte, 2009). In one study, ∼ 25% of
stroke survivors were excluded from QoL assessment
because of aphasia or cognitive impairments (Kwa,
Limburg, & de Haan, 1996). For this reason, there
is support for proxy judgements in which another
person reports for the person with communication
disability (Hilari & Byng, 2009; Hilari, Owen, &
Farrelly, 2007). However, most caution against proxy
judgements on personal or subjective domains (e.g.,
Carod-Artal, Coral, Trizzoto, & Moreira, 2009).
 84 N. Simmons-Mackie et al.
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Figure 1. Living with Aphasia: Framework for Outcome Measurement (A-FROM) (reprinted with permission of the Aphasia Institute,
For personal use only.
Toronto, Canada).
There is evidence that people with aphasia, even
severe aphasia, can report their own perspectives if
given appropriate communicative support (Engell
et al., 2003; Kagan et al., 2008; Luck & Rose, 2007).
There is a growing literature describing methods of
increasing communicative access for people with
aphasia (e.g., Alarcon & Rogers, 2010; Kagan, Black,
Duchan, Simmons-Mackie, & Square, 2001; Sim-
mons-Mackie, Kagan, O’Neill Christie, Huijbregts,
McEwen, & Willems, 2007). For example, character-
istics of aphasia-friendly printed materials and sup-
ports have been described (e.g., Hilari & Byng, 2001;
Kagan, 1998; Rose, Worrall, & McKenna, 2003;
Worrall, Rose, Howe, Brennan, Egan, Oxenham,
et al., 2005). The ALA was designed with these prin-
ciples in mind and in keeping with extensive experi-
ence in Supported Conversation for Adults with
Aphasia (SCATM), a method designed to facilitate
communication with people with aphasia (Kagan,
1998). Furthermore, the intent of the ALA was to
capture each person’s subjective perceptions of life,
a necessary element in devising person-centred goals.
The ALA was not envisioned as a test of clinician-
rated language performance. Therefore, self-report
was deemed appropriate for capturing the subjective
life experiences of people with aphasia.
Question/scale development. A large pool of self-report
questions related to living with aphasia were created
over a 2-year period based on the literature, research
team experience, and input from stakeholders,
including individuals with varying degrees of apha-
sia, their families, and speech-language pathologists
(SLPs). As items were developed, they were exam-
ined by the authors and others who volunteered to
help (21 SLPs; 24 people with aphasia). Examiners
were asked to try out questions to determine ease of
answering and relevance, and were encouraged to
suggest alternative wording, add questions, and pro-
vide feedback. In addition, the researchers and SLP
volunteers made determinations regarding the fit of
items with relevant A-FROM domains. These find-
ings, including the various iterations of the question
pool, were documented in methodological notes that
were maintained throughout the project. The process
resulted in a total of 57 questions including 52 items
that were scaled. Of the 52 scaled questions, there
were 23 items in the participation domain, five in the
language domain, nine in the environment domain,
13 in the personal domain, and two general ques-
tions about quality-of-life with aphasia (see Table I).
In addition there were five items designed to provide
descriptive information. These descriptive or fre-
quency questions (e.g., how many days a week do
you get out?) did not elicit ratings and were not
included in the scores; rather, they were provided to
orient the client to the specific content of following
questions and create a context for interpreting rat-
ings. An optional probe question was also included
for use when a rating was negative in order to deter-
mine whether it was aphasia that contributed to this
negative rating or some other cause.
 Assessment for living with aphasia 85

Table I. Abbreviated content of the 52 rated questions of the ALA followed by the five descriptive or frequency questions. Note that this
is not the actual wording of questions since questions are presented in a conversational script form.

Domains Question # Key content of Question

Language 2 Talking
3 Understanding
4 Reading
5 Writing
6 Aphasia overall
Participation 1 Knowledge of aphasia
8 Getting out to the places you want to go
10 Getting out the number of days you want
11 Doing what you want at home
12 Doing what you want regarding work or volunteering
13 Doing what you want regarding finances & money
14 Doing what you want regarding leisure and recreation
15 Doing what you want regarding learning new things
16 Getting the information that you need
17 Getting around like you want (transport)
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18 Performing your roles & responsibilities as you want

19 Your relationship with (name of key person)
20 Having conversations like you want
22 As many relationships and friends as you want
23 Joining in simple conversations
24 Joining in complicated conversations
25 Joining in conversation with other people with aphasia
26 Joining in conversations at home
27 Joining in conversations in the community
28 Forgetting about your aphasia in an aphasia group
29 Forgetting about your aphasia at home
30 Forgetting about your aphasia when out in the community
31 Aphasia getting in the way of doing what you want
For personal use only.

Environment 34 Getting help from others in an aphasia group

35 Getting help from others at home
36 Getting help from others in the community
37 Feeling comfortable talking in an aphasia group
38 Talking at home (supported)
39 Talking in the community (supported)
40 Knowing you are competent (other people with aphasia)
41 Others know you are competent (people at home)
42 Others know you are competent (people in community)
Personal 43 In charge of your life (autonomy)
44 Proud
45 Confident
46 Respected
47 Accepted
48 Lonely
49 Depressed
50 Frustrated
51 Angry
52 Think good things about yourself
53 Overall how do you feel
54 Things you enjoy and look forward to
55 Life in the future
Moving on with life question
56 Overall, does aphasia get in the way
57 Which one is you? (pictograph of moving on with life)
Descriptive items (not included in
the ALA scoring)
7 Number of places you go in a week
9 Number of days of week that you get out
21 Number of people you talk to in a week
32 Number of things you do to help you communicate
33 Number of things other people do to help you communicate

As questions were developed, corresponding developed to enable more accurate self-report for
pictographic support material was created along people with severe as well as mild and moderate
with a conversational script. The clinician script aphasia. The script was also designed to promote
and pictographic support (see Figure 2) were consistent administration of questions and client
 86 N. Simmons-Mackie et al.
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For personal use only.

Figure 2. Example of pictographic support included in the Assessment for Living with Aphasia (ALA). Each is an example of a page seen
by the client with aphasia during the administration of the ALA (reprinted with permission of the Aphasia Institute, Toronto, CA).

comprehension and to facilitate a conversational
feel to the assessment.
Rating scale. Questions on the ALA were answered
by identifying points on a 9-point, 0–4 rating scale
(with .5 point intervals). Zero (0) represented nega-
tive anchors such as never or definitely no, and
4 represented positive anchors such as always or
definitely yes. The 0–4 scale was chosen to maintain
consistency with the ICF which uses a 0–4 rating to
quantify the extent of problems associated with each
of the sub-categories defined in the ICF system
(WHO, 2001). Ratings obtained on the ALA were
summed for questions in each conceptual domain
(participation, language impairment, personal fac-
tors, environment), and the overall total score

included the sum of the domain ratings and a general
“moving on with life” question.
Pilot trials. A total of six pilot trials including 48 indi-
viduals with aphasia and five SLPs were carried out
over a 15-month period to refine the ALA questions
and rating scales. Each pilot trial involved one or
more administrations of the ALA to a group of par-
ticipants with aphasia by an experienced SLP. During
these trials feedback and face validity information
was obtained through interviews with SLPs and peo-
ple with aphasia. In addition, preliminary data regard-
ing reliability (intra-class correlations) and internal
consistency (Cronbach’s alpha) were obtained. Based
on results of each trial, questions were modified, rat-
ing scales were refined, and support materials were
revised. The result of question development and pilot
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trials was the version of the ALA used in the psycho-
metric evaluation reported below.
In order to evaluate the ALA, the following ques-
tions were asked: Is the ALA a reliable tool for
assessing people with aphasia as measured on test–
re-test? Is patient-reported QoL as assessed on the
ALA valid as measured by correlation with other
QoL measures and focus group feedback? Does the
ALA discriminate between people with aphasia of
varying severity?
For personal use only.
Method
Participants: Speech-language pathologists
Three SLPs administered all tests. Their aphasia
experience ranged from 2–20 years. All were trained
in conversation support (i.e., Supported Conversa-
tion for Adults with Aphasia SCA™, Kagan, 1998)
and all participated in ∼ 10 hours of preparation spe-
cific to the research protocol (e.g., administration of
reference measures such as the Stroke and Aphasia
Quality of Life Scale-39).
Participants: People with aphasia
Potential participants with aphasia were recruited
from outpatient facilities. All referred individuals
who met inclusion criteria and consented to partici-
pate were enrolled. Inclusion criteria included: diag-
nosis of aphasia, hearing and vision sufficient to
participate, ⱖ 18 years of age, at least 6 months post-
onset, not currently receiving speech-language ther-
apy and the ability to complete the assessment in
English. Diagnosis of aphasia was made by referring
SLPs based on clinical observation as well as admin-
istration of the Western Aphasia Battery (WAB)
(Kertesz, 1982). Diagnosis was confirmed by research
SLPs. Individuals with co-existing dementia were
excluded. Institutional review board approval was
obtained from all participating facilities, and proce-
dures complied with ethical guidelines for protection
of human subjects.
Assessment for living with aphasia 87
Sample size. Sample size calculations were per-
formed to power the construct validity or correla-
tion analyses using sample size formulae derived
from Fisher’s normalizing transformation (Fisher,
1926). Assuming a two-tailed type I error rate of
.05, power of 80%, and an absolute difference
between the null and alternative correlation coef-
ficient of .25, 75 participants would be required.
The sample size of 75 also provided a confidence
interval half-width around an intra-class correlation
coefficient (ICC) estimate of between .05–.10
depending on the size of the ICC estimate (Bon-
nett, 2002). Given the nature of the population
being sampled, a liberal loss-to-follow-up rate of
25% was assumed; thus, a recruitment target was
set at 100 individuals. A total of 142 people with
aphasia were approached; 39 of these recruits
declined to participate and two participants dropped
out early in testing, resulting in 101 participants
who completed the study. Table II provides charac-
teristics of participants with aphasia.
Procedures: Data collection
The ALA was administered in healthcare facilities,
aphasia community centres, or the participant’s
home, depending on participant preference. Assess-
ment occurred on two occasions for each participant
separated by ∼ 2 weeks. The SLP who administered
the ALA at time 1 also administered the ALA at time
2. At the time of the first administration four addi-
tional measures were completed. At the time of the
second assessment, only the ALA was administered.
All administrations were conducted face-to-face. In
addition to recording responses to all test items,
SLPs documented timing and relevant observations.
Video recorded samples of ALA administration were
reviewed by a research team member to assess fidel-
ity of ALA administration; all SLPs conformed to
pre-determined accuracy criteria.
In addition to the ALA, measures administered at
assessment time 1 included the Communication-
Associated Psychological Distress Scale of the Bur-
den of Stroke Scale (BOSS CAPD) (Doyle et al.,
2004), the Visual Analogue Self-Esteem Scale
(VASES) (Brumfitt & Sheeran, 1999), the Stroke
and Aphasia Quality of Life Scale-39 (SAQOL-39)
(Hilari et al., 2003), and the severity scale of the
Boston Diagnostic Aphasia Examination (BDAE)
(Goodglass & Kaplan, 1983). Order of administra-
tion of the BOSS CAPD, VASES, SAQOL-39, and
ALA was randomized for each participant. The
BDAE severity scale, a clinician rated 0–5 scale rang-
ing from no usable speech to minimal discernible
communication disability, was completed after the
other measures. For each participant, the research
SLP completed the BDAE severity ratings at the
conclusion of testing after they were familiar with the
participant’s communication performance.
 88 N. Simmons-Mackie et al.

Table II. Characteristics of participants with aphasia.

Variable Number/score

Gender (n ⫽ 101) Female 44 Male 57

Age in years (n ⫽ 101) Mean (SD): 64.59 (11.88) Range: 26–87 years
Ethnicity (n ⫽ 90)
Asian 6
Black 2
White 77
Other 5
Marital status (n ⫽ 99) Married 73 Single 26
Aetiology (n ⫽ 100)
Stroke 86
Trauma 5
Other 9
Months post-onset (n ⫽ 100) Mean (SD): 76.87 (73.90) Range: 6–440
WAB AQ (n ⫽ 99) Mean (SD): 69.11 (24.52) Range: 6.6–99
Aphasia type (n ⫽ 99)
Broca’s 29
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Global 5
Anomic 44
Wenicke’s 7
Conduction 13
Transcortical sensory 1
Estimate of aphasia severity (n ⫽ 101) Mild 9 Moderate 57 Severe 35
BDAE severity rating Mean (SD): 3.13 (1.18)
Co-existing disorders (n ⫽ 101)
Motor speech disorders 40
Hemiplegia/paresis 56
Hemi-neglect 4
Visual impairment (uncorrected) 18
For personal use only.

WAB, AQ: Western Aphasia Battery Aphasia Quotient (Kertesz, 1982); BDAE, Boston Diagnostic
Aphasia Examination (Goodglass, & Kaplan, 1983).

The BOSS CAPD, VASES, and SAQOL-39 were
chosen to assess construct validity since each con-
tains elements relevant to QoL. The BOSS CAPD is
a short, three-question scale that measures the psy-
chological impact of stroke-induced communication
disability. On a 5-point scale the client rates the fre-
quency that he/she experiences a particular construct
(e.g., dissatisfied with life). The VASES consists of
line drawings illustrating bipolar constructs (e.g.,
angry–not angry) and a 5-point rating scale to indi-
cate how people view themselves in relationship to
the construct. The SAQOL-39 is a comprehensive,
health-related QoL measure designed for and vali-
dated on people with aphasia (Hilari, Lamping,
Smith, Northcott, Lamb, & Marshall, 2009). The
SAQOL-39 consists of 39 orally-presented questions
addressing activities of daily living (e.g., preparing
food), physical function (e.g., walking), communica-
tion (e.g., finding a word), psychosocial function
(e.g., withdrawn), and energy (e.g., tired). People
with aphasia respond by rating responses on a 1–5
scale (e.g., definitely yes–definitely no; could not do
at all–no trouble at all).
Upon completion of all test administrations a
focus group of the three SLP assessors was held to
explore experiences administering the ALA and
other measures. This focus group was designed to
access information regarding face validity, ease of
administration, adverse effects, satisfaction with the
measures, and subjective impressions regarding dif-
ficulty for specific participant sub-groups.
Procedures: Data analysis
A qualitative analysis of themes from the research
SLP focus group was completed to identify key
features of experiences administering the ALA and
to gain an impression of face validity of the ALA.
In order to conduct this qualitative analysis, the
audio recorded focus group was orthographically
transcribed and thematic content was analysed
(Spradley, 1980).
A preliminary individual item analysis of all scored
ALA questions was conducted including descriptive
statistics (mean, median), test–re-test reliability of
individual items (intra-class correlation), and consid-
eration of focus group feedback. As part of this anal-
ysis, the polytomously scored ALA items were
evaluated against criteria for adequate functioning of
Likert-type scales and were collapsed as necessary.
The operative criteria for each item/question were:
ⱖ 10 responses for each point on the 9-point rating
scale and a unimodal distribution of responses across
categories (Linacre, 2004). A traditional psychometric
evaluation of the ALA following modification based
on focus group feedback and individual item analysis
(e.g., item removal, re-categorization of Likert scales)
was conducted to evaluate reliability and validity.
 Assessment for living with aphasia 89

Test–re-test reliability was performed for the total
score and conceptual domain totals. In addition,
item-total correlations and Cronbach’s alpha were
calculated to examine internal consistency. Con-
struct validity was evaluated by calculating Pear-
son’s correlation coefficients for the ALA total score
with previously validated measures related to QoL
in aphasia. Fisher’s z-transformation of the correla-
tion coefficients followed by a Student’s t-test was
used to determine if correlation coefficients were
significantly larger than a moderate correlation of
.50. Finally, discriminant group analysis was con-
ducted by grouping participants into aphasia sever-
ity groups based on their BDAE severity rating
(Goodglass & Kaplan, 1983). One-way analysis of
variance (ANOVA) followed by Bonferroni cor-
rected post-hoc pairwise comparisons were used to
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validity of questions, 15 of the original 52 rated items
were identified for removal from further analysis.1
Decisions regarding exclusion of these items depended
on poor item test–re-test reliability (ICC ⬍ 0.50) and
focus group feedback (see Table III). In addition, one
item (# 12) was removed from further analysis due
to missing values (see Table IV for a list of these
questions).
The remaining 37 polytomously-scored items of
the ALA were evaluated for adequate functioning.
The original 9-point Likert scale (0–4 with .5 inter-
vals) resulted in almost all items failing to meet the
criteria outlined for an adequate rating scale. Col-
lapsing each of the scores into a 5-point scale for
purposes of analysis (0–.5 → 1; 1–1.5 → 2; 2–2.5 →
3; 3–3.5 → 4; 4 → 5) resulted in an overall ALA
score that met criteria for adequate functioning, with

examine differences in ALA scores across aphasia
severity groups. All analyses were conducted in SAS
v9.2 (Cary, NC) except for evaluating the item
responses distribution which was conducted using
WINSTEPS 3.73 (Linacre, 2011).
Results
Developing the scoring algorithm of the ALA
For personal use only.
four individual questions that had fewer than 10
responses in the lowest category. These four ques-
tions were maintained as 5-point scales to facilitate
the scoring process.
The final ALA scores, after item modifications,
were normally distributed (Skewness: ⫺0.05; Kurtosis:
⫺.47; Shapiro-Wilk test for normality W: ⫺.99,
p ⫽ .61). The maximum observed score was 180
points out of a possible 185, and the minimum
observed score was 86 (minimum possible score 37).

Based on individual item analysis and specific At the conclusion of this stage of data analysis, 37
feedback from the SLP focus group regarding face scored ALA questions remained.

Table III. Descriptive statistics on each ALA scored item including the mean score and standard
deviation (SD), item median and item test–re-test reliability (intra-class correlation: ICC).

Test–re-test Test–re-test
Item # Mean (SD) Median (ICC) Item # Mean (SD) Median (ICC)

1 3.79 (.98) 4.0 .60 30b 2.80 (1.16) 3.0 .62

2 3.06 (1.05) 3.0 .63 31b,c 2.54 (1.02) 3.0 .49
3 3.96 (.99) 4.0 .66 34c 4.26 (.85) 4.0 .28
4 3.03 (1.33) 3.0 .78 35b,c 3.86 (1.03) 4.0 .48
5 2.62 (1.16) 3.0 .53 36b 3.28 (1.10) 3.0 .56
6 3.19 (.88) 3.0 .50 37c 3.28 (1.10) 3.0 .29
8 3.67 (1.10) 4.0 .58 38 4.19 (.88) 4.0 .56
10 3.90 (1.22) 4.0 .68 39 3.48 (1.09) 4.0 .62
11 3.68 (1.18) 4.0 .61 40b,c 4.41 (.80) 5.0 .49
12a 3.72 (1.30) 4.0 .75 41 4.30 (.87) 5.0 .55
13 3.39 (1.46) 3.0 .69 42 3.26 (1.09) 3.0 .53
14 3.73 (1.05) 4.0 .50 43 3.80 (1.18) 4.0 .67
15 3.47 (1.13) 4.0 .55 44b,c 3.86 (1.01) 4.0 .46
16b 3.24 (1.14) 3.0 .54 45 3.88 (.89) 4.0 .52
17 3.75 (1.34) 4.0 .58 46 3.82 (.85) 4.0 .56
18 3.81 (.98) 4.0 .54 47 4.07 (.72) 4.0 .51
19 4.25 (.91) 4.0 .76 48 3.44 (1.12) 3.0 .69
20 3.75 (.98) 4.0 .57 49 3.59 (1.20) 4.0 .73
22 3.99 (1.03) 4.0 .54 50 3.06 (.97) 3.0 .60
23 4.00 (.95) 4.0 .61 51 3.52 (.99) 4.0 .50
24 2.96 (1.19) 3.0 .51 52 3.88 (.83) 4.0 .59
25b,c 4.38 (.65) 4.0 .48 53b 3.85 (.90) 4.0 .54
26 4.10 (.81) 4.0 .57 54 4.05 (.71) 4.0 .59
27 4.38 (.65) 4.0 .56 55 4.19 (.84) 4.0 .68
28b,c 3.14 (1.20) 3.0 .44 56c 1.77 (.91) 2 .32
29b,c 3.12 (1.16) 3.0 .49 57 3.85 (.86) 4.0 .57
aDeleted from subsequent analysis due to a large number of missing values.
bDeleted from scoring algorithm due to poor face validity in focus group.
cDeleted from scoring algorithm due to poor item test–re-test reliability.
 90 N. Simmons-Mackie et al.

Table IV. Abbreviated content of items with poor test–re-test Table VI. Test–re-test reliability as measured by intra-class
reliability, face validity, or missing values. correlations (ICC) (with 95% confidence intervals (CI)) for each
ALA domain and total ALA score along with Cronbach’s alpha
Question for internal consistency.
# Item content
Cronbach’s
12* Doing what you want regarding work or ICC (95% CI) Alpha
volunteering
16 Getting the information that you need Language .712 (.605, .799) .592
25 Joining in conversation with people with aphasia Participation .834 (.763, .885) .862
28 Forgetting about your aphasia in an aphasia group Environment .681 (.560, .773) .720
29 Forgetting about your aphasia at home Personal .800 (.707, .855) .891
30 Forgetting about your aphasia when out in the Moving on with life .568 (.420, .687) –
community Total .857 (.796, .902) .812
31 Aphasia getting in the way of doing what you
want
34 Getting help from others in an aphasia group
of the moving on with life question was .57. The
35* Getting help from others at home
36* Getting help from others in the community lower 95% confidence bound was .68 for the four a
37 Feeling comfortable talking in an aphasia group priori domains and .42 for the moving on with life
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40 Knowing you are competent (other people with question, suggesting acceptable test–re-test reliabil-
aphasia) ity. In addition, internal consistency of the domains
44 Do you feel proud of yourself as measured by Cronbach’s alpha was acceptable-
53 Overall how do you feel
56 Overall, does aphasia get in the way
to-high for all domains and the total score.
*Note: Item 12 was not included in psychometric evaluation due
Construct validity. A statistically significant and mod-
to missing values; but the question was subsequently revised,
tested, and included in the published version of the ALA. Items
erately strong positive correlation was observed
35 and 36 are retained in the published ALA to facilitate the between the ALA total score and the SAQOL-39
conversational flow and context, but are not included in the (.72) and VASES (.62) (Table VII). A significant
scoring algorithm due to poor reliability. negative correlation was found with the BOSS CAPD
(⫺.69). Each of these correlations was significantly
For personal use only.

Evaluation of ALA greater than a moderate correlation of .50 (p ⫽ .032

ALA domain correlations with total scores. To evaluate
whether a total ALA score would be informative,
consistent and non-redundant, correlations between
domain scores and ALA total score were conducted.
Correlations between each a priori domain and the
total ALA score ranged from a low of .69 to a high
of .87 (Table V). Thus, the four a priori domains
correlated highly with the total score (Participation,
Personal Factors, Language, and Environment in
order of level of correlation), while the singular ques-
tion representing moving on with life was only mod-
erately correlated (r ⫽ .43). The correlations suggest
that the total ALA score is reflective of the overall
quality-of-life of people with aphasia, in particular
their participation and personal factors.
Test–re-test reliability and internal consistency. Test–
re-test reliability was excellent for the ALA total
score (ICC ⫽ .86). Furthermore, individual domains
demonstrated moderate-to-strong test–re-test reli-
ability ranging from .68–.83 (see Table VI); reliability
Table V. Correlation (Pearson’s) between domain scores and total
ALA score.
Correlation with
Domain ALA total score
or less). The negative direction of correlation with
the BOSS CAPD relates to the difference in the
direction of the rating scales (5 on the CAPD is
negative, while 4 on the ALA is positive).
Discriminant group analysis. Although all dimensions
of the ALA contribute to accurate characterization
of aphasia-related QoL, we hypothesized that cer-
tain domains would more powerfully discriminate
between people with aphasia of varying severity.
Discriminant group analyses were conducted to
determine if the ALA scores would discriminate
aphasia severity sub-groups, as measured on the
BDAE severity rating (Goodglass & Kaplan, 1983).
Participants with aphasia were classified into mild,
moderate, and severe groups based on scores. The
p-values in Table VIII demonstrate a significant dif-
ference (p ⬍ .05) in the severity of aphasia for lan-
guage, participation, and personal domains as well
as for the total ALA score. Bonferroni corrected
Table VII. Correlation (Pearson’s) of ALA total score with three
reference measures.
Pearson’s correlation
Reference coefficient with ALA
measure total score p-value*

Language .722 SAQOL-39 .721 ⬍.001

Participation .942 VASES .617 .032
Environment .691 BOSS CAPD ⫺.689 .008
Personal .868
*Test for difference in absolute correlation from a null value of
Moving on with life .425
moderate correlation (.50).
 Assessment for living with aphasia 91

Table VIII. Discriminant group analyses conducted with one-way analysis of variance (ANOVA) followed
by Bonferroni correction using ALA scores and BDAE severity ratings grouped into mild, moderate,
and severe aphasia.

Overall BDAE Mild BDAE Moderate BDAE Severe

(n ⫽ 101) (5⫹) (n ⫽ 9) (3–4) (n ⫽ 57) (1–2) (n ⫽ 35) p-value
ALA Mean (SD) Mean (SD)* Mean (SD)* Mean (SD)* Overall

Language 15.9 (3.3) 19.7 (2.6)a 16.2 (3.0)b 14.3 (3.2)c ⬍.001
Participation 59.6 (10.2) 68.9 (7.7)a 59.1 (9.5)b 58.1 (10.9)b .014
Environment 15.2 (2.9) 16.9 (2.2)a 15.2 (2.9)a 14.8 (2.9)a .154
Personal 41.2 (7.1) 45.9 (5.3)a 40.0 (6.7)b 42.0 (7.9)a,b .048
Moving on 3.9 (.9) 4.1 (.9)a 3.8 (.8)a 3.9 (1.0)a .639
Total 135.8 (20.6) 155.4 (16.1)a 134.3 (18.8)b 133.1 (22.2)b .009

BDAE, Boston Diagnostic Aphasia Examination (Goodglass & Kaplan, 1983).

*a,b,cAcross each row if two means have different superscript letters, then they are statistically different
from each other at the .05 level after Bonferroni correction.

post-hoc pairwise comparisons were completed to across a variety of domains including real life par-
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locate the source of differences and revealed that the
language impairment domain discriminated between
all aphasia severity groups. Mild aphasia was differ-
ent from moderate and severe aphasia in participa-
tion and total scores, and differed from moderate
aphasia for the personal domain. ALA total and par-
ticipation scores did not discriminate between mod-
erate and severe aphasia as measured herein. Nor
did ALA scores discriminate between severity levels
for the environment domain or moving on with life
For personal use only.
ticipation, a construct that is rarely measured for
people with aphasia (Dalemans et al., 2008).
Construct validity
Moderate correlations between the ALA and the
BOSS CAPD, VASES, and SAQOL-39 suggest that
these measures share some common constructs. We
did not expect very strong correlations with the com-
parison measures since the ALA measures unique

question. aspects of QoL. In other words, while all the measures

Focus group results
Focus group participants felt that the ALA had
strong clinical utility, was relatively easy to admin-
ister, and provided valuable information not avail-
able via other measures. They identified several
items with poor face validity (e.g., patients did
not seem to fully understand the question) and
recommended that these items be removed. Focus
group members reported their subjective impres-
sions that the ALA was appropriate for all severity
groups.
Time taken to complete the ALA
The time taken to complete the ALA (prior to elim-
inating questions) averaged 40 minutes across all
participants with a range from 10–95 minutes. The
lower extreme (10 minutes) represented an individ-
ual with very mild aphasia; while the upper extremes
of time represented people with more severe aphasia
suggesting that level of severity influences the time
it takes to administer the ALA.
Discussion
The ALA demonstrates acceptable test–re-test reli-
ability, construct validity, and face validity within the
scope of this evaluation. It provides a means of cap-
turing individual perceptions of life with aphasia
shared some elements of QoL, none of the compari-
son measures were entirely coherent with the ALA.
For example, the BOSS CAPD and the VASES target
components of psychosocial state and well-being. The
SAQOL-39 includes a variety of content items that
are not sampled on the ALA such as energy and phys-
ical function, and includes more activity questions vs
comprehensive life participation questions typical of
the ALA (e.g., SAQOL asks about standing or using
the phone vs ALA questions about taking care of
responsibilities at home). The tools also differ on
rating methods. For example, questions on the
SAQOL-39 ask clients to consider the difficulty of
performing tasks or roles while the ALA asks clients
to consider satisfaction with particular constructs
(e.g., relationships). Finally, there are differences in
the “aphasia friendliness” of measures, that is, the
degree to which language barriers are reduced to
allow for participation of people with aphasia, includ-
ing severe aphasia. For example, the psychometric
trial of the SAQOL-39 excluded individuals with
severe aphasia and neither the BOSS CAPD nor the
SAQOL-39 are delivered in an aphasia friendly picto-
graphic format. Focus group members reported that
they found the SAQOL-39 difficult to administer to
individuals with moderately severe or severe aphasia.
The total score
The overall ALA score is considered to be an esti-
mate of “aphasia-related quality-of-life”. While the
 92 N. Simmons-Mackie et al.
ALA total score is weighted towards participation
as reflected in the number of questions in the par-
ticipation domain and the high correlation between
participation and the total score (.94), all of the ALA
domains were, in fact, correlated with the total.
The weighting towards participation is conceptually
in line with research demonstrating that social
relationships and participation in life roles and
events are key dimensions of QoL in aphasia (Cruice
et al. 2003, 2010; Dijkers, 1997). In fact research-
ers suggest that in rehabilitation “… participation
level outcomes are probably the strongest correlate
of subjective QoL, above and beyond activities or
impairments” (Eadie, Yorkston, Klasner, Dudgeon,
Deitz, Baylor, et al., 2006, p. 317).
Since the ALA is a measure of aphasia-related
quality-of-life, it focuses on what people do, how
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they feel, and what goes on around them in everyday
life. Unlike “health-related” QoL measures, the ALA
does not attempt to identify aspects of illness or
physical function. Nor does it attempt to define spe-
cific causes of high or low QoL scores. The ALA does
not include questions specifically related to physical
disability, financial stability, or other factors that can
affect an individual’s overall life satisfaction and
quality. However, the questions on the ALA do assess
overall satisfaction with participation (e.g., doing
For personal use only.
what you want to do) and psychosocial adjustment;
thus, it indirectly targets issues of general QoL with-
out directly asking about issues such as mobility or
overall health. Moreover, the ALA provides the clini-
cian or researcher with the option to determine if
low ratings are related to aphasia or to some other
factor (e.g., impaired mobility).
Domain scores
This initial evaluation of the ALA focuses on test–
re-test reliability and construct validity of questions
designed to represent life with aphasia; these ques-
tions were organized into a priori ICF domains in
order to provide insight into the relative contribution
of these conceptual domains to overall life with apha-
sia as measured on the ALA. Thus, aspects of psy-
chosocial adjustment, participation, environment,
and language were assessed from the perspective of
the person with aphasia. Organization of the ALA
into these ICF domains is in line with trends in reha-
bilitation in general. Future research is needed to aid
in interpretation of the domain scores. In addition,
further research is needed to interpret the moving
on with life question.
Discriminant group analysis
Results from discriminant analysis suggest that the
ALA discriminates between mild, moderate, and
severe aphasia on the language domain and between
mild and moderate/severe aphasia for participation,
personal factors, and the total score. The fact that
the ALA discriminated between severity groups on
the language domain suggests ALA self-rating of lan-
guage impairment was predictive of clinician severity
ratings, thus supporting construct validity. The fail-
ure to discriminate between moderate and severe
groups on participation, personal factors, and total
scores was not unexpected, since degree of severity
is not necessarily directly translatable to these ele-
ments of QoL (e.g., Ross & Wertz, 2002). For exam-
ple, people with severe aphasia might perceive their
participation as satisfactory, while someone with
moderate aphasia might be unsatisfied with their
participation. The fact that the ALA discriminated
between mild aphasia and moderate/severe aphasia
might relate to the fact that members of the mild
group were very mildly impaired as reflected in rat-
ings of 5 on the BDAE severity rating (“minimal
discernible communication disability”). Perhaps
people with very mild aphasia are more likely to suc-
cessfully reintegrate into former or new lifestyles,
while persons with moderate or severe disability are
more likely to encounter some barriers to living suc-
cessfully with aphasia, and this is reflected in their
ALA scores.
Instrument accessibility
It was the subjective impression of the research SLPs
that the pictographs and key words did not interfere
with participation of individuals with mild aphasia,
but did facilitate participation of individuals with
moderate and severe aphasia. Future research might
specifically address the perceptions and preferences
of people with aphasia across a range of severities
regarding the pictographic format.
Limitations of the current study
Appropriate skill of the SLP in communication sup-
port is deemed necessary for valid and reliable
administration of the ALA. The research SLPs in
this study were not only trained in ALA administra-
tion, but also were skilled in communication sup-
port. Although communication support is a widely
used method of facilitating communication with
people with aphasia (Alarcon & Rogers, 2010;
Kagan, 1998; Kagan et al., 2001), the level of train-
ing of the SLPs in this study constitutes a potential
limitation since practicing clinicians might not have
similar training. Also, the current project did not
address inter-rater reliability; varied levels of skill
and the ability to implement the conversational
script may affect agreement across raters. Finally,
the degree of support offered by the SLP during
administration may introduce bias (as compared to
independent self-report instruments). This potential
limitation is partially mitigated by verification tech-
niques designed to ensure that the viewpoint of the
person with aphasia is correctly represented in the
scoring. In order to address potential reliability

issues, a training DVD has been developed to iden-
tify key features of administration; this DVD and a
manual outlining features of test administration are
included with the ALA.
Another limitation of this study was the potential
occurrence of life altering events between first and
second administrations of the ALA. Since this ques-
tion was not addressed with participants, it is impos-
sible to determine if intervening events affected
ALA results on the second administration. How-
ever, if this were the case, the bias would likely be
towards lower correlations; thus, ICC estimates are
conservative.
Finally, fully coherent comparison measures for
demonstrating construct validity were not available.
The scales that we used to measure construct valid-
ity included elements similar to the ALA. While this
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likely impacted the strength of correlations between
the ALA and the other measures, the lack of ideal
comparison measures demonstrates the need for
aphasia-friendly tools that specifically target living
with aphasia.
Future directions and conclusions
As with any new measure, user experience and
For personal use only.
input will inform future development of the ALA.
However, several research questions remain to be
answered. Future research might focus on addi-
tional psychometric analysis such as factor analysis
or Rasch analysis to further analyse the properties
of the ALA. Also, research testing the ALA’s sensi-
tivity to change over time and after intervention is
needed. Currently, research is being conducted
using the ALA to document longitudinal changes
in life with aphasia during the first year post-
stroke (Worrall, Simmons-Mackie, Kahn & Brown,
in progress); such data will contribute to knowl-
edge regarding the sensitivity of the ALA. Research
might also focus on the sensitivity of the ALA to
changes after particular interventions believed to
impact life quality with aphasia. In addition, future
research is needed to test inter-rater reliability of
the ALA and use of the ALA by SLPs who have
access to the ALA DVD training but who have not
received the more rigorous training provided for
the study SLPs.
In conclusion, the ALA is an aphasia friendly mea-
sure that allows people with aphasia to participate in
reporting aspects of their own QoL. Reliability and
validity data suggest that the ALA shows promise for
evaluating aphasia-related QoL from the perspective
of the person with aphasia.
Note
1. The published version of the ALA reflects
the removal of items based on reliability and
validity results.
Assessment for living with aphasia 93
Declaration of interest: The authors report no
conflicts of interest. The authors alone are respon-
sible for the content and writing of the paper.
This research was supported with a grant from the
Ontario Ministry of Health and Long Term Care
through the Ontario Stroke Strategy.
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