Do people with epilepsy want to participate in an exercise intervention randomized controlled trial? - Results of a brief survey and its preliminary application

Brandon S Mitchell; Christian Puzzo; Charity J Morgan; Jerzy P Szaflarski; Johanna L Popp; Ricardo Ortiz-Braidot; Anna Moyana; Jane B Allendorfer

doi:10.1016/j.ebr.2023.100632

Do people with epilepsy want to participate in an exercise intervention randomized controlled trial? - Results of a brief survey and its preliminary application

Epilepsy Behav Rep. 2023 Nov 4:24:100632. doi: 10.1016/j.ebr.2023.100632. eCollection 2023.

Authors

Affiliations

¹ University of Alabama at Birmingham, Department of Psychology, Birmingham, AL, USA.
² University of Alabama at Birmingham, Department of Neurology, Birmingham, AL, USA.
³ University of Alabama at Birmingham, Department of Biostatistics, Birmingham, AL, USA.
⁴ University of Alabama at Birmingham, Department of Neurobiology, Birmingham, AL, USA.
⁵ University of Alabama at Birmingham, UAB Epilepsy Center, Birmingham, AL, USA.

Abstract

Our goal was to survey people with epilepsy (PWE) about their interest in and factors that may influence willingness and ability to participate in an exercise randomized controlled trial (RCT). A brief survey was administered to 100 PWE asking if they would take part in a hypothetical 6-week exercise intervention RCT. Follow-up questions queried reasons for and against participation and why participation would be difficult. Sixty-nine percent of respondents indicated willingness to participate. The top reason for participation was "to improve overall health with exercise" (n = 49). The top reason for why participation would be difficult was they "do not have a reliable source of transportation" (n = 27). The top reason for not participating was "not interested in research participation" (n = 19). Preliminary results were used to budget for transportation in a prospective RCT (NCT04959019). Of the first 27 PWE enrolled (63 % female; 44 % African American/Black), six (50 % female; 50 % African American/Black) have used the transportation service. The majority of PWE surveyed were interested in participating in an exercise RCT, but some indicated barriers. Accommodating transportation in an ongoing RCT has facilitated recruitment of PWE who would otherwise not be able to participate. Barriers to participation should be accounted for when designing studies.

Keywords: Epilepsy; Exercise; Recruitment; Research participation; Survey.

Grants and funding

R01 HD102723/HD/NICHD NIH HHS/United States