"From Victimhood to Warriors": Super-researchers' Insights Into Alzheimer's Disease Clinical Trial Participation Motivations

Shoshana H. Bardach, PhD; Kelly Parsons, CSW; Allison Gibson, MSW, PhD; Gregory A. Jicha, MD, PhD

Disclosures

Gerontologist. 2020;60(4):693-703. 

In This Article

Abstract and Introduction

Abstract

Background and Objectives: Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer's disease. While barriers to participation are well documented, less is known about motivations for Alzheimer's disease clinical research participation. The purpose of this study was to explore what motivates individuals—who ultimately develop an ongoing connection to research and frequently participate—to engage and stay involved in Alzheimer's disease research.

Research Design and Methods: Individuals who had participated in multiple Alzheimer's disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.

Findings: Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer's disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.

Discussion and Implications: These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.

Introduction

The prevalence of Alzheimer's disease (AD) is currently 5.7 million Americans and is anticipated to reach 14 million by 2050 (Alzheimer's Association, 2018). Currently, there are symptomatic treatments, but no disease modifying drugs (Kumar, Singh, & Ekavali, 2015). Scientists are exploring various disease targets, but the rate of scientific discovery is slowed by recruitment challenges (Beattie et al., 2018).

In 2018, the National Institute on Aging developed a report outlining a national strategy to guide recruitment for AD and related dementia clinical research (National Institute on Aging, 2018). This report describes the recruitment need as a, "pressing need for increased and diverse participation in research studies." (p. 1) and acknowledges that "scientific research on clinical trial recruitment effectiveness is limited" (p. 25). Wong, Amano, Lin, Zhou, and Morrow-Howell (2019) recently conducted a synthesis of recruitment and retention strategies for minority engagement in AD research and found that less than half of the identified studies evaluated recruitment strategy effectiveness through a pre- and postanalysis and that none of the studies identified use a randomized controlled trial design. Wong and colleagues characterized all of the studies reviewed as methodologically weak (Wong et al., 2019). Neither the review nor the national strategy included any mention of theories or models to guide recruitment and retention strategies.

Various models and theories exist to predict engagement in a variety of health protective behaviors (Davis, Campbell, Hildon, Hobbs, & Michie, 2015), but there is a need for theory designed specifically to predict research engagement. The decision to engage in AD clinical trials can be better understood through the development of an evidence-based theoretical model that highlights key factors that promote participation, thereby providing a framework for understanding AD recruitment.

Previously identified barriers to clinical research participation include research mistrust, insufficient information, protective caregiver behaviors, and logistical factors such as the requirement of a study partner and the extensive time commitment required (Bull, Boaz, & Sjostedt, 2014; Grill, Zhou, Elashoff, & Karlawish, 2016; Williams et al., 2010). Facilitation of research encompasses more than just the absence or amelioration of barriers. Facilitators include altruism, the hope for personal benefit, and positive relationships between the researchers and the community (Grill, Karlawish, Elashoff, & Vickrey, 2013; Williams et al., 2010). However, these facilitators are often identified based on discussions of hypothetical research participation; since intention does not always translate into behavior, insights into research motivators should come from individuals participating in real-world research. Given the longitudinal nature of most AD prevention and treatment studies, understanding factors that relate to continued engagement is also important. Findings regarding research engagement from other disease contexts or non-interventional research studies may not apply in the AD clinical trial context. Accordingly, the purpose of this study was to better understand what factors motivate individuals to become engaged and stay involved in longitudinal AD prevention and treatment clinical trials.

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