Retaining Participants in Longitudinal Studies of Alzheimer’s Disease
Article type: Research Article
Authors: Gabel, Matthewa; b; * | Bollinger, Rebecca M.c | Coble, Dean W.c | Grill, Joshua D.d | Edwards, Dorothy F.e; f | Lingler, Jennifer H.g; h | Chin, Erine | Stark, Susan L.b; c
Affiliations: [a] Department of Political Science, Washington University in St. Louis, St. Louis, MO, USA | [b] Knight Alzheimer Disease Research Center, Washington University in St. Louis, St. Louis, MO, USA | [c] School of Medicine, Washington University in St. Louis, St. Louis, MO, USA | [d] Institute for Memory Impairments and Neurological Disorders, Departments of Psychiatry & Human Behavior and Neurobiology & Behavior, University of California Irvine, Irvine, CA, USA | [e] School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA | [f] Wisconsin Alzheimer’s Disease Research Center, School of Medicine and Public Health, University of Wisconsin-Madison, Madison, WI, USA | [g] School of Nursing, University of Pittsburgh, Pittsburgh, PA, USA | [h] Alzheimer’s Disease Research Center, University of Pittsburgh, Pittsburgh, PA, USA
Correspondence: [*] Correspondence to: Matthew Gabel, Washington University in St. Louis, Campus Box 1063, One Brookings Drive, St. Louis, MO 63130, USA. Tel.: +1 314 935 5810; E-mail: [email protected].
Abstract: Background:Retention of study participants is essential to advancing Alzheimer’s disease (AD) research and developing therapeutic interventions. However, recent multi-year AD studies have lost 10% to 54% of participants. Objective:We surveyed a random sample of 443 participants (Clinical Dementia Rating [CDR]≤1) at four Alzheimer Disease Research Centers to elucidate perceived facilitators and barriers to continued participation in longitudinal AD research. Methods:Reasons for participation were characterized with factor analysis. Effects of perceived fulfillment of one’s own goals and complaints on attendance and likelihood of dropout were estimated with logistic regression models. Open-ended responses suggesting study improvements were analyzed with a Latent Dirichlet Allocation topic model. Results:Factor analyses revealed two categories, personal benefit and altruism, as drivers of continued participation. Participants with cognitive impairment (CDR > 0) emphasized personal benefits more than societal benefits. Participants with higher trust in medical researchers were more likely to emphasize broader social benefits. A minority endorsed any complaints. Higher perceived fulfillment of one’s own goals and fewer complaints were related to higher attendance and lower likelihood of dropout. Facilitators included access to medical center support and/or future treatment, learning about AD and memory concerns, and enjoying time with staff. Participants’ suggestions emphasized more feedback about individual test results and AD research. Conclusion:The results confirmed previously identified facilitators and barriers. Two new areas, improved communication about individual test results and greater feedback about AD research, emerged as the primary factors to improve participation.
Keywords: Alzheimer’s disease, barriers, facilitators, retention
DOI: 10.3233/JAD-215710
Journal: Journal of Alzheimer's Disease, vol. 87, no. 2, pp. 945-955, 2022
