Communicating Alzheimer's biomarker results to cognitively unimpaired research participants: Satisfaction, utility, and impact on research attitudes

Abstract

AbstractIntroductionRecruitment and retention pose a significant challenge to Alzheimer's disease (AD) research. Returning AD biomarker results to participants has been proposed as a means to improve recruitment and retention. We present findings related to participant satisfaction, utility, and impact on research attitudes from the amyloid positron emission tomography (PET) disclosure sub‐study within the Wisconsin Registry for Alzheimer's Prevention (WRAP).MethodsNinety‐nine cognitively unimpaired WRAP participants learned their amyloid PET results (mean age ± SD = 72.0 ± 4.8). Measures of reasons for wanting to learn results, study comprehension, result utility, visit satisfaction, research attitudes, and future study enrollment willingness were collected. Between‐group, chi‐squared analysis was conducted to determine differences by result type (elevated vs. not elevated amyloid PET result) in study comprehension, result utility, and visit satisfaction. Linear mixed‐effects modeling was used to evaluate changes in research attitudes and enrollment willingness as a function of time, amyloid result type (elevated/not elevated), and their interaction.ResultsThe reasons most frequently endorsed for wanting to learn amyloid PET result was a “desire to contribute to research on Alzheimer's disease dementia” and “to inform preventative measures [one] might take (e.g., change diet, exercise, or other lifestyle changes).” Overall, participants reported understanding the results and found learning them useful. Satisfaction with the study visits was overwhelmingly high, with over 80% agreeing with visit usefulness and their satisfaction. Few differences were found between participants who learned an elevated and not elevated result. Over the course of the study, participants who learned an elevated amyloid PET result reported higher willingness to enroll in drug trials (beta: 0.12, p = 0.01) and lifestyle interventions (beta: 0.10, p = 0.02) compared to participants who learned a not elevated result.DiscussionFormal incorporation of disclosure practices may encourage participant recruitment and retention within AD research.Highlights Participants wanted to learn their amyloid results to contribute to research. Satisfaction with disclosure and post‐disclosure visits was high overall. Returning AD biomarkers can increase willingness to participate in research.