Retention of Study Partners in Longitudinal Studies of Alzheimer Disease

Article type: Research Article

Authors: Bollinger, Rebecca M.^a | Gabel, Matthew^{b; c; *} | Coble, Dean W.^{a; c} | Chen, Szu-Wei^a | Keleman, Audrey A.^a | Doralus, Jeff^d | Chin, Erin^e | Lingler, Jennifer H.^{f; g} | Grill, Joshua D.^h | Stark, Susan L.^{a; c} | Edwards, Dorothy F.^{e; i}

Affiliations: [a] Washington University School of Medicine in St. Louis, St. Louis, MO, USA | [b] Department of Political Science, Washington University in St. Louis, St. Louis, MO, USA | [c] Knight Alzheimer Disease Research Center, Washington University in St. Louis, St. Louis, MO, USA | [d] Meharry Medical College, Nashville, TN, USA | [e] University of Wisconsin – Madison, School of Medicine and Public Health, Madison, WI, USA | [f] University of Pittsburgh School of Nursing, Pittsburgh, PA, USA | [g] Alzheimer’s Disease Research Center, University of Pittsburgh, Pittsburgh, PA, USA | [h] Institute for Memory Impairments and Neurological Disorders, Departments of Psychiatry & Human Behavior and Neurobiology & Behavior, University of California Irvine, Irvine, CA, USA | [i] Wisconsin Alzheimer’s Disease Research Center, University of Wisconsin School of Medicine and Public Health, Madison, WI, 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:Study partners are required for all participants at Alzheimer’s Disease Research Centers (ADRCs). Study partners’ attitudes and beliefs may contribute to missed visits and negatively impact retention of participants in longitudinal AD studies. Objective:Study partners (N = 212) of participants (Clinical Dementia Rating® [CDR]≤2) at four ADRCs were randomly surveyed to examine their facilitators and barriers to continued participation in AD studies. Methods:Reasons for participation were analyzed with factor analysis and regression analysis. Effects of complaints and goal fulfillment on attendance were estimated with fractional logistic models. Open-ended responses were characterized with a Latent Dirichlet Allocation topic model. Results:Study partners participated for personal benefit and altruism. They emphasized personal benefits more when their participants had a CDR > 0 than when they had a CDR = 0. This difference declined with participant age. The majority of study partners rated their ADRC participation as positive and meeting their goals. Although half reported at least one complaint, very few regretted participating. Those who reported that ADRC participation fulfilled their goals or had fewer complaints were more likely to have perfect attendance. Study partners requested more feedback about test results and better management of study visits. Conclusion:Study partners are motivated by both personal and altruistic goals. The salience of each goal depends on their trust in researchers and the participant’s cognitive status and age. Retention may improve with perceived goal fulfillment and fewer complaints. Potential areas for improving retention are providing more information about the participant’s test results and better management of study visits.

Keywords: Adult children, Alzheimer’s disease, barriers, facilitators, spouse

DOI: 10.3233/JAD-230079

Journal: Journal of Alzheimer's Disease, vol. 94, no. 1, pp. 189-199, 2023