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INTRODUCTION: Information on the psychosocial impact of Alzheimer's disease (AD) biomarker testing in adults at risk of AD is needed to inform best practices for communicating biomarker results. METHODS: Ninety-nine cognitively unimpaired older adults learned amyloid positron emission tomography (PET) results (mean age = 72.0 ± 4.8, 95% White, 28% elevated amyloid). Linear mixed-effects regression models were used to test the main effects and interaction of PET result × time on psychosocial outcomes up to 6 months after learning results. RESULTS: A significant interaction of PET result × time was observed for concern about AD (ß = 0.28, p = 0.02) and intrusive thoughts and avoidance (ß = -0.82, p < 0.001). A main effect of PET result was observed for AD test-related distress (ß = 12.09, p < 0.001). DISCUSSION: Cognitively unimpaired adults learning elevated-amyloid PET results reported mildly intrusive thoughts/avoidance initially following disclosure, but these symptoms decreased over time. Concern about AD dementia and AD biomarker test-related distress remained higher in elevated-amyloid compared to non-elevated-amyloid participants. HIGHLIGHTS: Longitudinal assessment of psychosocial reactions after amyloid PET disclosure was conducted. Transient highly intrusive thoughts or avoidance after learning elevated amyloid results. Persistent test result-related distress after receiving elevated-amyloid results. There is increased concern about AD dementia after receiving elevated-amyloid results. Happiness and relief are experienced after receiving non-elevated-amyloid results.
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Introduction: Recruitment 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). Methods: Ninety-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. Results: The 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. Discussion: Formal 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.