Living With Aphasia: An International Study

Synopsis: This three year longitudinal study, based on a gerontological model, was the
product of an Aphasia Think-Tank established in Toronto in 2007. The original concept and
design, developed at Queensland Hospital in Australia, has been recently funded by the
Australian National Health and Medical Research Council.

Rationale: Aphasia, which occurs in 30% of ischemic first strokes, is known to have a
negative impact on quality of life, increase the incidence of post-stroke depression, be
associated with a loss of self identity, and have a widespread effect on partners, children,
siblings, and friends. Research conducted in Australia and the United Kingdom (UK) provides
evidence that many persons living successfully with aphasia do not attribute their successes
to speech-language pathology and rehabilitation services. Inappropriate, irrelevant,
inaccessible, or non-existent required services have been cited. It has also been reported
that current speech-language pathology service providers lack an overall understanding of
the long term goals of aphasia rehabilitation and how these objectives may be achieved.

Hypothesis: It is hypothesized that an analysis of parallel qualitative and quantitative
data is necessary to examine the full experience of living with aphasia; it is also
hypothesized that there are specific factors that act as barriers or facilitators to
successfully living with aphasia.

Methodology: The primary study site of this international research is the Community
Disability Centre of the School of Health and Rehabilitation Medicine, University of
Queensland. The Department of Rehabilitation Medicine, New York University (NYU) School of
Medicine will collaborate by following, to the extent possible, the same protocols as the
Australian team with respect to subject selection criteria, measures used, and test
time-points. This is a prospective cohort study which uses parallel qualitative and
quantitative (mixed) methods in a unique way to quantify the extent of and statistically
model the relationship of the determinants to self-rated "successfully living with aphasia".
Furthermore, it will permit an understanding of the underlying reasons (the why and how)
behind the relationships. A unique aspect of the project is the use of the Assessment for
Living with Aphasia (ALA), a new, aphasia friendly measure based on the World Health
Organization International Classification of Functioning, Disability and Health (WHO ICF).
It is a specialized tool using a self-rating scale and is focused on specific themes that
have emerged from previous research. 204 subjects will be recruited who consent to being
examined at 3, 6, and 12 months post-stroke. Considering an attrition rate of 25%, it is
estimated that 153 subjects will provide the study data. Each session will be videotaped and
consist of the administration of a demographic questionnaire, the Assessment for Living with
Aphasia (ALA), the Western Aphasia Battery-Revised (a standardized measure which
investigates language understanding and expression), a social-convoy model, the Barthel
Index, the Wepman Self-Correction Scale, and the Aphasic Depression Rating Scale.

Anticipated Results: The outcomes of this project will lead to better services for people
with aphasia via a fully articulated model of the predictive factors of success following
aphasia. Not only will a statistical model be generated but the meaning of the factors and
the relationships between them will be explained through the qualitative studies. For
example, if decreasing social network size and satisfaction is a significant predictor
variable of successfully living with aphasia, then rehabilitation services must target the
loss of social networks in the first year through a variety of available but infrequently
used interventions (e.g. communication partner training. The qualitative data will describe
how social networks have changed (e.g. less contact with friends or formal groups) and why
(e.g. communication or mobility issues) so that appropriate interventions are targeted to
the correct group. This research will lead to substantial changes across the continuum of
all aphasia rehabilitation services throughout the United States. Specifically, it will
improve meaningful outcomes for persons with aphasia in terms of how to live successfully
with aphasia. Results will also streamline aphasia services so that they meet the needs of
this seriously disabled population who often cannot speak for themselves and rely on costly
services for many years after their stroke. This international project will lead the way in
changing speech pathology practices to meet the needs of people with aphasia around the
world.

Inclusion Criteria:

- 18 years of age and older, willingness to be videotaped, first incidence of aphasia
secondary to stroke with stroke onset ≤2.5

- months pre-stroke or 3.5 months post-stroke with no significant complicating
concomitant conditions (e.g. dementia, schizophrenia),

- premorbid fluency/literacy in English, and no history of psychiatric disorder, and
sufficient communication ability (including adequate hearing and vision) in English
to participate in an interview as determined by a qualified speech pathologist based
on administration of the Western Aphasia Battery - Revised and clinical observation.

- participants will be enrolled in the study at 3 months post onset (+/- 2 weeks)
wherever they are living, and presence of aphasia will be confirmed at the beginning
of the first interview using the Aphasia Quotient cut offs of the Western Aphasia
Battery.

- participants with severe global aphasia will only be excluded after the interview if
meaningful responses cannot be obtained using all available communication support
tools. Hence, participants with a range of aphasia severity will be included.

Exclusion Criteria:

- unwillingness to be videotaped

- onset of stroke <2.5 months post and >3.5 months post

- moderate or severe dementia

- symptoms of another preexisting neurological condition other than or in addition to
aphasia due to stroke, or drug abuse

- neurological surgical treatment not including a surgical treatment specifically for
treatment of stroke, absence of aphasia.

- no subjects will have a hearing loss unexpected for his/her chronological age.