Patient voices to enhance concussion research participation: an exploratory qualitative study.

Abstract

Purpose: There are unique characteristics of vulnerability among adult patients who experience a concussion and have persistent symptoms suggesting the need to tailor recruitment and retention strategies for this population. We aimed to obtain perspectives from post-concussion patients regarding factors they value to encourage recruitment and support retention, thereby assisting research teams conducting studies on concussion.

Methods: The authors used purposive, nonrandom sampling to identify potential research participants for this exploratory qualitative sub-study. Interview questions were designed using Appreciative Inquiry to gain patient-centered approaches to support recruitment and retention. Transcripts from telephone interviews were analyzed using reflexive thematic analysis.

Results: We identified two main themes: 1) positive change and 2) participant-centered study design. Each main theme had three sub-themes to support recruitment and/or retention. Positive changes included a) meaningful study impact, b) personal contribution counts, and c) gain information, and reassurance. Participant-centered study design included a) convenience, b) accommodation, and c) feeling valued.

Conclusions: Focused efforts in planning to recruit and retain vulnerable populations for research are paramount. Based on our exploratory findings from a limited sample, we offer patient-reported insights to reflect upon the ongoing learning process to optimize recruitment and retention in the field of concussion research.