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Understanding Barriers to Retention after a Clinical Treatment Trial Drop Out: Translating Qualitative Research and Theory to Practice

Anjanette A Wells, Lawrence A Palinkas and Kathleen Ell

Clinical trial dropout is a major obstacle to understanding the most effective depression treatments for low-income, minority depressed cancer patients. This study reports provider perspectives of barriers in a cohort of low-income, predominately minority cancer participants who were enrolled and then dropped out of a large NCI-funded depression treatment trial (Alleviating Depression among Patients with Cancer [ADAPt-C]); and uses Andersen and Newman’s Individual Determinants of Health Service Utilization (2005) model as a socio-culturally sensitive framework to explore retention priorities among underserved cancer patients in depression treatment. This was a qualitative study conducted from a subset of 15 ADAPt-C dropout participants. Provider clinical chart notes were abstracted to identify barriers to continuing treatment and a template analysis approach was used to identify general issues related to dropout. Providers reported: Predisposing component barriers related to patients’ Social Structure and Beliefs; Enabling barriers related to Family and Community; and Perceived Illness
barriers related to their Perceived and Evaluated Illness. This study illuminates newly identified predisposing “psychological coping” belief barriers. Findings reveal that the classic work of Andersen and Newman’s (2005) model of health use is a useful heuristic for categorizing retention barriers, distinguishing the family, and other societal, health services system, and individual factors. This knowledge will help develop interventions that address barriers among this population and will help develop better clinical trial recruitment and retention strategies to help hard-to-reach populations remain in treatment.