Overcoming Barriers to Recruitment and Retention of Research Participants with Aphasia

Research Objectives: To evaluate strategies to improve recruitment and retention efforts in a longitudinal, observational study of stroke participants with aphasia.

Design: This observational, longitudinal study explores factors contributing to optimal recovery of individuals with aphasia following stroke. Participants are assessed during their inpatient rehabilitation stay, and again at 3-, 6-, 12-, and 18-months post-stroke. The evaluations include performance and self-report measures of language, cognition, community participation and quality of life. The study also analyzes genomic data through saliva samples and MRI imaging data.

Setting: Recruitment and initial evaluations occur at four Midwestern inpatient rehabilitation hospitals. Follow-up evaluations occur post discharge in-person or virtually.

Participants: Over 230 participants diagnosed with post-stroke aphasia have been enrolled to date. Our participant cohort is diverse with over 20% minority enrollment. Initial severity of aphasia ranges from very mild (98.7 Aphasia Quotient on the WAB-R) to very severe (3.5 Aphasia Quotient on the WAB-R).

Interventions: Recruitment strategies include (1) discussing the benefits of monitoring neurological recovery and rehabilitation progress, (2) highlighting altruistic benefits, such as how their participation may help others who sustain aphasia in the future, (3) using aphasia-friendly communication supports to ensure comprehension, and (4) contacting patients and family frequently to individualize their experience. Retention strategies include (1) flexible scheduling, (2) option for in-home or remote evaluations, (3) multimodal communication methods, and (4) a quarterly newsletter with study reminders, research updates, and upcoming community events.

Main Outcome Measures: Participant retention at 18-months.

Results: In the first 2.5 years of the study, 52% of participants discontinued before 18-months. After implementing new recruitment and retention strategies, the dropout rate is approximately 15%.

Conclusions: Patients with aphasia are frequently excluded from research studies due to the presence of a communication disorder. This poster indicates that with the use of personalized, aphasia-friendly strategies, participants can be recruited and retained in research studies. Thus, aphasia-friendly communication supports should be utilized to ensure comprehension and encourage engagement throughout a study.

Author(s) Disclosures: Supported by Grant #5R01DC017174 from the National Institute on Deafness and Other Communication Disorders.