Patient perspectives on factors associated with enrollment and retention in chronic disease self-management programs: a systematic review

Background: Challenges exist when enrolling and retaining chronic disease patients in self-management programs. Exploring patient perspectives on participating in self-management programs may enhance study enrollment and retention and thereby improve health outcomes. Limited review research has synthesized patient perspectives on intrapersonal and sociocontextual factors influencing participation in chronic disease self-management programs. Objective: To synthesize empirical qualitative research exploring intrapersonal (ie, predisposing) and sociocontextual (ie, predisposing, enabling, need) factors influencing patient enrollment and retention in chronic disease self-management programs. Method: A systematic literature review was conducted using Garrard’s Matrix Method to retrieve articles published between 1997 and 2015 from electronic databases (PsycINFO, CINAHL, MEDLINE). Andersen’s Behavioral Model of Health Services Use was used to synthesize data according to intrapersonal and sociocontextual factors impacting participation in self-management programs. Results: Thirteen (N=13) qualitative studies met inclusion criteria. Most studies focused on cardiovascular (n=4; 30.76%) and chronic lower respiratory (n=3; 23.07%) diseases. Predisposing factors such as limited disease-specific knowledge, negative outcome expectations of self-management, and confusion about comorbidity self-care negatively influenced the decision to participate. Enabling factors, including opportunities for social support, positively influenced the decision to participate in self-management programs. Scheduling conflicts negatively influenced patient participation. Beliefs that current health care was sufficient deterred patients from participating in self-management programs. Discussion: Making perceived benefits of participating in chronic disease self-management programs more salient to patients and their health care providers has the potential to enhance patient enrollment and retention. Researchers and clinicians may begin to improve patient participation in chronic disease self-management programs by implementing patient-centered education to increase disease-specific knowledge and an understanding of the recruitment, enrollment, and retention process in research. Future research should explore the intrapersonal and sociocontextual factors influencing patient participation in self-management programs that offer enhanced accessibility and social support from peers and caregivers.