Overcoming barriers to recruitment and retention of African-American women with SLE in behavioural interventions: lessons learnt from the WELL study

Abstract

Background: African-Americans are historically under-represented in SLE studies and engaging them in behavioural interventions is challenging. The Women Empowered to Live with Lupus (WELL) study is a trial conducted to examine the effectiveness of the Chronic Disease Self-Management Program (CDSMP) among African-American women with SLE. We describe enrolment and retention challenges and successful strategies of the WELL study.

Methods: The Georgians Organized Against Lupus (GOAL) cohort, a population-based cohort established in Atlanta, Georgia, was used to enrol a sample of 168 African-American women with SLE into the CDSMP. The CDSMP is a 6-week, group-based programme led by peers to enhance self-management skills in people with chronic conditions. Study performance standards were predefined and close monitoring of recruitment and retention progress was conducted by culturally competent staff members. Continuous contact with participants, research coordinators' notes and regular research team meetings served to assess barriers and define strategies needed to meet the desired recruitment and retention outcomes.

Results: While no substantial barriers were identified to enrol GOAL participants into the WELL study, WELL participants faced difficulties registering for and/or completing (attending ≥4 sessions) a CDSMP workshop. Major barriers were unpredicted personal and health-related issues, misunderstanding of the scope and benefits of the intervention, and transportation problems. Early implementation of tailored strategies (eg, CDSMP scheduled on Saturdays, CDSMP delivered at convenient/familiar facilities, transportation services) helped to reduce participant barriers and achieve a CDSMP registration of 168 participants, with 126 (75%) completers. Frequent contact with participants and compensation helped to reach 92.3% retention for the 6-month survey.

Conclusions: Predefined standards and monitoring of participant barriers by a culturally competent research team and proactive solutions were critical to implementing successful strategies and achieving the desired recruitment and retention outcomes of a behavioural trial involving African-American women with SLE.

Trial registration number: NCT02988661.

Keywords: patient perspective; qualitative research; systemic lupus erythematosus.