A patient-centered, theory-guided approach to examining the barriers and enablers to trial participation among people with SCD.

ABSTRACT:

Objective

Recruitment to clinical trials involving sickle cell disease (SCD) patients can be challenging, leaving trialists uncertain about how to optimize recruitment approaches and strategies. Informed by the Theoretical Domains Framework (TDF), we identified a comprehensive set of barriers and enablers to participation in SCD trials, and suggest how this theory-informed survey approach can improve trial recruitment strategies.

Methods

In collaboration with Clinical Trials Ontario and Sickle Cell Awareness Group of Ontario (SCAGO), we conducted a mixed methods study involving interviews with and surveys of SCD patients and families. We iteratively adapted a template survey based on think-aloud interviews, before administering the adapted survey online to SCAGO membership.<

SUBMITTER: Carroll K 

PROVIDER: S-EPMC12529103 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature