Comparing the Community-Identified and Federally Funded Rehabilitation Priorities for Stroke Survivors With Aphasia

Person-centered rehabilitation for stroke survivors with aphasia (SSwAs) targets meaningful recovery goals using interventions supported by strong scientific evidence. To maximize clinical impact, aphasia research should provide evidence that directly supports person-centered recovery goals. The purpose of this project was to characterize and compare the rehabilitation priorities of SSwAs living in the United States to the research priorities of federally funded aphasia clinical trials.

Community-identified priorities were characterized by a narrative literature review. Priorities of federally funded aphasia clinical trials were defined based on primary and secondary outcomes and extracted from ClinicalTrials.gov. Priorities were classified using deductive coding via the World Health Organization's International Classification of Functioning, Disability and Health.

Results from the narrative literature review were limited but suggest that SSwAs prioritize function-focused goals in their rehabilitation, with little mention of priorities related to impairment or contextual factors. Conversely, only approximately 13% of primary outcomes and 31% of secondary outcomes for federally funded aphasia clinical trials from the last 10 years included function-focused measures, with most relying on impairment-based measures.

Findings suggest a misalignment between the rehabilitation priorities identified by SSwAs and the highest level of evidence currently being provided by federally funded aphasia clinical trials. Adjustments in clinical trial design, including engaging end users as partners in research, may improve this alignment and lead to stronger support for evidence-based person-centered care in aphasia rehabilitation.

https://doi.org/10.23641/asha.33166736.