Clinical Trial: Living With Aphasia: An International Study

Study Status: Terminated
Recruit Status: Terminated
Study Type: Observational

Official Title: Living With Aphasia: An International Study

Brief Summary: This prospective cohort study hypothesizes 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. 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). Each session will assess written and spoken language, functional communication, mobility, Activities of Daily Living (ADL) function, burden of stroke, quality of life, and depression.

Detailed Summary:

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 su
Sponsor: New York University School of Medicine

Current Primary Outcome: The Assessment for Living with Aphasia [ Time Frame: 9 months ]

A new, aphasia friendly measure based on the World Health Organization International Classification of Functioning, Disability, and Health. It is a specialized tool using a self-rating scale and is focused on specific themes that have emerged from previous research.


Original Primary Outcome: Same as current

Current Secondary Outcome:

  • Western Aphasia Battery - Revised [ Time Frame: 9 months ]
    This measure is designed to assess clinical aspects of language functions in aphasic patients and to provide the data needed to establish a prognosis for therapy.
  • Successfully Living with Aphasia Rating Scale [ Time Frame: 9 months ]
    This scale is a quantitative self-rating of how successfully a person is living with aphasia.
  • Burden of Stroke Scale [ Time Frame: 9 months ]
    The Burden of Stroke Scale is a health-status assessment instrument designed to measure patient-reported difficulty in multiple domains of functioning, psychological distress associated with specific functional limitations, and general well-being in stroke survivors.
  • Aphasia Depression Rating Scale [ Time Frame: 9 months ]
    The Aphasic Depression Rating Scale (ADRS) was developed to detect and measure depression in aphasic patients during the subacute stage of stroke.
  • The Wepman Self-Correction Scale [ Time Frame: 9 months ]
    This scale, based on a continuum, measures disturbances in the ability of the person with aphasia to self-correct speech and language errors.
  • The Barthel Index [ Time Frame: 9 months ]
    This measure is a simple index of independence to score the ability of a patient with a neuromuscular or musculoskeletal disorder to care for himself.
  • The Functional Communication Profile [ Time Frame: 9 months ]
    This rating scale is for persons with aphasia which considers 45 everyday communication behaviors. Ratings of each behavior are made on a 9-point scale, based on observations of the patient during an informal conversation.


Original Secondary Outcome:

  • Western Aphasia Battery - Revised [ Time Frame: 9 months ]
    This measure is designed to assess clinical aspects of language functions in aphasic patients and to provide the data needed to establish a prognosis for therapy.
  • Successfully Living with Aphasia Rating Scale [ Time Frame: 9 months ]
    This scale is a quantitative self-rating of how successfully a person is living with aphasia.
  • Burden of Stroke Scale [ Time Frame: 9 months ]
    The Burden of Stroke Scale is a health-status assessment instrument designed to measure patient-reported difficulty in multiple domains of functioning, psychological distress associated with specific functional limitations, and general well-being in stroke survivors.
  • Aphasia Depression Rating Scale [ Time Frame: 9 months ]
    The Aphasic Depression Rating Scale (ADRS) was developed to detect and measure depression in aphasic patients during the subacute stage of stroke.
  • The Wepman Self-Correction Scale [ Time Frame: 9 months ]
    This scale, based on a contnuum, measures disturbances in the ability of the person with aphasia to self-correct speech and language errors.
  • The Barthel Index [ Time Frame: 9 months ]
    This measure is a simple index of independence to score the ability of a patient with a neuromuscular or musculoskeletal disorder to care for himself.
  • The Functional Communication Profile [ Time Frame: 9 months ]
    This rating scale is for persons with aphasia which considers 45 everyday communication behaviors. Ratings of each behavior are made on a 9-point scale, based on observations of the patient during an informal conversation.


Information By: New York University School of Medicine

Dates:
Date Received: October 15, 2010
Date Started: June 2010
Date Completion:
Last Updated: June 14, 2016
Last Verified: June 2016