151. Perspectives From Black and White Participants and Care Partners on Return of Amyloid and Tau PET Imaging and Other Research Results.
- Author
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Rahman-Filipiak A, Lesniak M, Sadaghiyani S, Roberts S, Lichtenberg P, and Hampstead BM
- Subjects
- Adult, Humans, Alzheimer Disease diagnostic imaging, Alzheimer Disease ethnology, Alzheimer Disease psychology, Amyloid beta-Peptides, Amyloidogenic Proteins, tau Proteins, White People, Black or African American, Amyloid, Caregivers, Cognitive Dysfunction diagnostic imaging, Cognitive Dysfunction ethnology, Cognitive Dysfunction psychology, Positron-Emission Tomography, Truth Disclosure
- Abstract
Purpose: Alzheimer disease (AD) biomarker testing is now common in research and approaching clinical translation. Disclosure protocols must be informed by diverse participants' perspectives on if/how the information would be useful., Methods: This study utilized semistructured interviews assessing interest in receiving positron emission tomography (PET) amyloid and tau results, as well as perceived risks and benefits of hypothetical PET disclosure as a function of race and participant diagnosis., Participants: Participants [39% Black; 61% White; Mage =74.28 (5.98)] included 57 adults diagnosed as either cognitively healthy (58%) or with mild cognitive impairment (42%) and their respective care partners [33% Black; 67% White; Mage =66.93 (10.92)]., Results: Most dyads endorsed strong interest in PET results (82.5% of both participants and partners) regardless of race or diagnosis. Black care partners were less interested in receiving the participant's results than White care partners ( χ2(4) =8.31, P =0.047). Reasons for disclosure were diverse and highly personalized, including access to treatments or clinical trials (23.2% participants; 29.8% partners), advance planning (14.3% participants; 17.5% partners), and improved health knowledge (12.5% participants; 15.8% partners). In contrast, over 80% of respondents denied any risks of disclosure., Discussion: Results suggest that predisclosure education, decisional capacity assessment, and a flexible disclosure approach are needed., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc.)
- Published
- 2023
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