Clinical Research Participation among Aging Adults Enrolled in an Alzheimer's Disease Center Research Registry

Article type: Research Article

Authors: Jefferson, Angela L.^{a; b; *} | Lambe, Susan^{a; b; c} | Chaisson, Christine^{a; d} | Palmisano, Joseph^{a; d} | Horvath, Kathy J.^{a; e} | Karlawish, Jason^f

Affiliations: [a] Alzheimer's Disease Center, Boston University School of Medicine, Boston, MA, USA | [b] Department of Neurology, Boston University School of Medicine, Boston, MA, USA | [c] Department of Psychology, University of Massachusetts at Boston, Boston, MA, USA | [d] Data Coordinating Center, Boston University School of Public Health, Boston, MA, USA | [e] Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA, USA | [f] Alzheimer's Disease Center, Department of Medicine, Division of Geriatric Medicine, Center for Bioethics, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

Correspondence: [*] Correspondence to: Angela L. Jefferson, PhD, Alzheimer's Disease Center, Boston University School of Medicine, Robinson Complex, Suite 7800, 72 East Concord Street, Boston, MA 02118 2526, USA. Fax: +1 617 414 1197; E-mail: [email protected].

Abstract: In light of our limited understanding of what motivates older adults to participate in clinical studies of Alzheimer's disease (AD), the current study examines incentives and barriers to participating in AD clinical research among older adults. 235 participants enrolled in the Boston University Alzheimer's Disease Center research registry (75 ± 8 years, range 58–99 years, 60% female), a longitudinal registry from which individuals are recruited into other clinical studies, completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. Insufficient time was a commonly endorsed barrier to enrolling in other Center-approved studies, particularly among younger participants. Driving and a lack of transportation to the medical facility were also barriers, particularly for older participants. Transportation was the most popular incentive, followed by home-based visits (particularly for older participants and participants with less formal education) and compensation (particularly among respondents from racial/ethnic minority groups). Participation interest in other studies was associated with favorable medical research attitudes (r = 0.34, p = 0.00003) but not religiousness (r = −0.09, p = 0.21), or trust in healthcare institutions (r = 0.09, p = 0.17). Among older adults, societal benefit is a motivating factor for registry enrollment; however, participation in additional studies is hindered by insufficient time among younger participants and transportation barriers among older participants. Providing transportation, home-based visits, and modest compensation may improve participation rates. Furthermore, favorable attitudes toward medical research are strongly associated with interest in enrolling in additional studies and may serve as a beneficial outreach triage technique.

Keywords: Alzheimer's disease, barriers, clinical research, incentives, participation

DOI: 10.3233/JAD-2010-101536

Journal: Journal of Alzheimer's Disease, vol. 23, no. 3, pp. 443-452, 2011