Participant education and preparedness in learning personal β‐amyloid PET results: Preliminary findings from the Wisconsin Registry for Alzheimer’s Prevention

Abstract

AbstractBackgroundEarlier detection of Alzheimer’s disease (AD) coupled with improved accessibility of testing means more adults may learn their biomarker results. To reduce potential negative psychosocial impacts and promote autonomy to act on the AD risk information to make lifestyle and advanced care planning changes, it is imperative that individuals understand the meaning of their results. The Wisconsin Registry for Alzheimer’s Prevention is disclosing β‐amyloid (Aβ) PiB‐PET results to a subsample of cognitively unimpaired older adult participants and assessing the impact of Aβ‐PET disclosure on psychological well‐being, health behaviors, and long‐term planning.MethodPrior to learning Aβ‐PET results, participants (n = 64,age = 71.4±4.6) engaged in an education session. Participants were assessed on their baseline knowledge of AD and meaning of Aβ‐PET results utilizing a 15‐question quiz with multiple choice and true/false questions. Next, participants were guided through a 20‐minute interactive presentation describing AD and potential Aβ‐PET results. The same quiz was administered again to ensure adequate understanding. We assessed within‐person differences on pre‐ and post‐education quiz scores using paired t‐tests. The Views and Perceptions of Amyloid Imaging questionnaire surveyed reasons participants wanted to learn their Aβ‐PET results. Upon study completion, participants provided feedback on their experience and satisfaction with different elements of the education session.ResultThe most common reasons participants reported wanting to learn their Aβ‐PET results included to contribute to AD research (88.9% very‐extremely important) and to inform potential preventative measures (85.2% very‐extremely important). Post‐education quiz scores were on average two points higher than baseline scores (t = 10.2, df = 62, p<0.0001). Of those that have completed 6‐month follow‐up, over 90% agreed they understood the meaning of elevated and non‐elevated results and 73% agreed the educational materials were useful.ConclusionEven in this highly educated and research‐involved group, an education session improved knowledge about AD risk and amyloid PET results. As research further elucidates the relationship between preclinical biomarker accumulation and AD dementia risk, it will be important to effectively communicate findings with individuals who learn their AD biomarker results. Returning results can promote transparency and potentially goodwill with participants. However, responsible return of results must incorporate intentional efforts to ensure understanding of such information.