Recruitment and retention of young adults with sickle cell disease

Abstract

Background

Research has illuminated the challenges of recruiting and retaining adolescents and young adults (AYA) in research studies due to environmental, community, and personal factors. The Community Health Workers and Mobile Health for Emerging Adults Transitioning Sickle Cell Disease Care (COMETS) Study is a RCT comparing the effectiveness of two self-management support interventions, Community Health Workers (CHW) and Mobile Health (mHealth), versus enhanced usual care to improve health-related quality of life for transitioning AYA with sickle cell disease (SCD). The aim of this paper is to describe recruitment and retention strategies used in the COMETS study.

Methods

Recruitment and retention strategies that were identified prioritized the complex relationships between AYA with SCD and their environments. AYA (17 and older) were approached for study participation across five SCD centers in NY, PA, OH, and CT. Study team members approached patients to complete surveys at 6-, 12-, and 18- months after study enrollment.

Results

Of the 496 young adults approached, 405 were enrolled and 375 were randomized (median age=18 years, range=17–28). Enrolled subjects evenly identified as male (49%) and female (50%). Most participants identified as Black or African American (95%) and 8.2% of participants identified as Hispanic/Latino. Retention rates were: 82% at 6 months, 82% at 12 months and 77% at 18 months.

Conclusions

Implementing recruitment and retention strategies that take into consideration participant environmental, community, and personal factors are imperative for success. Study teams should be prepared for ongoing refinement of strategies based on participant and collaborator feedback.