Subject Recruitment and Retention against Quadruple Challenges in an Intervention Trial of End-of-Life Communication

Abstract

Studies of end-of-life care face difficulties associated with enrollment and attrition. Information and exemplars can help end-of-life care researchers anticipate such difficulties and customize recruitment and retention strategies to achieve planned sample sizes. We analyzed data on recruitment and retention efforts used in a clinical trial of an end-of-life communication intervention that involved African American dialysis patients and their chosen surrogate decision makers. Despite the challenges the trial faced (e.g., recruiting a minority group of patients who were seriously ill, had a surrogate decision maker willing to join the study, and were willing to engage in end-of-life discussions), the planned sample size was met, and nearly 90% of the participants completed the study. Various strategies were used to sustain accrual during the study. Although a total of 16 contacts per dyad had been planned from enrollment to 3-months data collection, 27 contacts were actually needed. The strategies and procedures used in this study may be pertinent to other studies that involve African Americans with serious illness and require dyadic participation.