Beyond psychological well‐being and behavior change: Participant experience and evaluation of an AD biomarker disclosure and lifestyle counseling protocol

Abstract

AbstractBackgroundEarlier detection and improved accessibility of testing means more adults may learn their Alzheimer’s biomarker results. Incorporating feedback from individuals who have learned their results is important to improve disclosure protocols and individual outcomes.MethodParticipants (n = 97,age = 71.9±4.8) from the Wisconsin Registry for Alzheimer’s Prevention study enrolled in a disclosure study consisting of an education session, amyloid PET results disclosure, and lifestyle counseling visit. Participants reported their visit satisfaction and provided feedback for improvement. Upon study completion, participants evaluated various study procedures (e.g., understanding of the results, regret in learning result, etc.). Chi‐square analyses and response distributions were computed to compare participants with an elevated and non‐elevated amyloid result.ResultNo statistically significant differences in disclosure or lifestyle visit satisfaction were found between participants with an elevated and non‐elevated amyloid PET result. Overall, 95% of participants reported that the disclosure visit was “somewhat” or “very” useful. 70% of participants endorsed the usefulness of the lifestyle counseling visit. 100% and 81% of participants recommended we continue disclosure and lifestyle counseling visits, respectively. For the disclosure visit, both groups suggested we provide more information on the amyloid result (e.g., provide scans, risk, etc.), offer an in‐person, face‐to‐face visit, and reduce the number of questions assessing suicidal ideation. Elevated participants suggested allowing a loved one to join the visit. Feedback on the lifestyle counseling visit included more accountability check‐ins and providing a more personalized discussion. On study evaluation measures, groups differed on the reported usefulness of educational materials (χ2(2,n = 87) = 6.42,p = .04) and regret in learning results (χ2(2, n = 87) = 10.7,p = .005). While no participants regretted learning their results, elevated participants were more likely to respond “neutral” (15% vs 0%), whereas non‐elevated participants were more likely to respond “strongly disagree” (74% vs. 54%) to regretting learning their result. There were no group differences on understanding or usefulness of result.ConclusionWe found very limited differences between elevated and non‐elevated participants on satisfaction and evaluation of learning amyloid PET results. It remains important to offer follow‐up, especially for elevated participants, who may need extra support post‐disclosure. Ultimately, most participants found the study visits worthwhile and found learning their result useful.