Views and perceptions of amyloid imaging in a preclinical Alzheimer’s disease trial

Abstract

AbstractBackgroundStudies have shown that many cognitively unimpaired older individuals are interested in learning their Alzheimer’s disease (AD) biomarker results. Yet, little is known about what motivates participation in preclinical AD trials that require amyloid biomarker testing and disclosure, and whether these motivations differ by biomarker results (elevated or not‐elevated amyloid).MethodUsing data from the EARLY trial, a preclinical AD trial testing the safety and efficacy of a BACE1 inhibitor, we analyzed participant responses on the Views and Perceptions of Amyloid Imaging (VPAI) scale (Table 1) that was collected during the screening process; that is, before undergoing biomarker testing and disclosure. Participants were asked to rate how important 9 potential reasons for seeking amyloid imaging were to them. Response options included “not at all” (1), “a little” (2), “somewhat” (3), “very” (4), and “extremely” (5). We categorized raw scores into binary responses; those with high endorsement (scores ≥4) and those with low‐to‐moderate endorsement (scores <4). We stratified participant responses by amyloid group to examine whether their biomarker status impacted participant item‐level VPAI scores.ResultPrior to biomarker testing and disclosure, participants most often endorsed the desire to contribute to research as a motivation to participate (Table 1). In general, the not‐elevated amyloid group had higher endorsement for the VPAI items than the elevated amyloid group. The proportions of participants endorsing “confirm feeling that I might be developing dementia” and “preparing family members” were observed to be higher among participants with elevated compared to not‐elevated amyloid; whereas “curiosity” was endorsed by a higher proportion of the not‐elevated amyloid group.ConclusionWhile there are individual differences in reasons for seeking an amyloid scan, preclinical AD trial participants may be largely motivated by altruistic factors. Differences in factors that motivate participants to learn biomarker results may be apparent between amyloid groups even before biomarker disclosure.