Affiliations: [a] Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
| [b] Dartmouth College, Hanover, NH, USA
| [c] Department of Anesthesiology & Critical Care, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
| [d] Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA
| [e] Department of Psychiatry and Human Behavior, Department of Neurobiology and Behavior, University of California, Irvine; Institute for Memory Impairments and Neurological Disorders; Institute for Clinical and Translational Science, Irvine, CA, USA
Correspondence:
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Correspondence to: Emily A. Largent, JD, PhD, RN, 423 Guardian Drive, Room 1403, Philadelphia, PA 19104, USA. Tel.: +1 215 573 8106; E-mail: elargent@pennmedicine.upenn.edu.
Abstract: Background:Participants in Alzheimer’s disease (AD) prevention studies are generally required to enroll with a study partner; this requirement constitutes a barrier to enrollment for some otherwise interested individuals. Analysis of dyads enrolled in actual AD trials suggests that the study partner requirement shapes the population under study. Objective:To understand if individuals can identify someone to serve as their study partner and whether they would be willing to ask that individual. Methods:We conducted semi-structured interviews with cognitively unimpaired, English-speaking older adults who had previously expressed interest in AD research by signing up for a research registry. We also interviewed their likely study partners. Audio-recorded interviews were transcribed and coded in an iterative, team-based process guided by a content analysis approach. Results:We interviewed 60 potential research participants and 17 likely study partners. Most potential participants identified one or two individuals they would be willing to ask to serve as their study partner. Interviewees saw value in the study partner role but also understood it to entail burdens that could make participation as a study partner difficult. The role was seen as relatively more burdensome for individuals still in the workforce or with family responsibilities. Calls from the researcher to discuss the importance of the role and the possibility of virtual visits were identified as potential strategies for increasing study partner availability. Conclusion:Efforts to increase recruitment, particularly representative recruitment, of participants for AD prevention studies should reduce barriers to participation by thoughtfully designing the study partner role.
Keywords: Alzheimer’s disease, ethics, registries, research, research design
