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

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.

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.

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.

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.