journal articles
A PRAGMATIC, INVESTIGATOR-DRIVEN PROCESS FOR DISCLOSURE OF AMYLOID PET SCAN RESULTS TO ADNI-4 RESEARCH PARTICIPANTS
C.M. Erickson, J. Karlawish, J.D. Grill, K. Harkins, S.M. Landau, M.G. Rivera-Mindt, O. Okonkwo, R.C. Petersen, P.S. Aisen, M.W. Weiner, E.A. Largent
J Prev Alz Dis 2024;2(11):294-302
BACKGROUND: Prior studies of Alzheimer’s disease (AD) biomarker disclosure have answered important questions about individuals’ safety after learning and comprehending their amyloid PET results; however, these studies have typically employed highly structured disclosure protocols and focused on the psychological impact of disclosure (e.g., anxiety, depression, and suicidality) in homogeneous populations. More work is needed to develop flexible disclosure protocols and study outcomes in ethnoculturally representative samples.
METHODS: The Alzheimer’s Disease Neuroimaging Initiative (ADNI) is formally incorporating amyloid PET disclosure into the newest protocol (ADNI-4). Participants across the cognitive spectrum who wish to know their amyloid PET results may learn them. The pragmatic disclosure process spans four timepoints: (1) a pre-disclosure visit, (2) the PET scan and its read, (3) a disclosure visit, and (4) a post-disclosure check-in. This process applies to all participants, with slight modifications to account for their cognitive status. In designing this process, special emphasis was placed on utilizing investigator discretion. Participant measures include perceived risk of dementia, purpose in life, and disclosure satisfaction. Investigator assessment of the disclosure visit (e.g., challenges encountered, topics discussed, etc.) is also included.
RESULTS: Data collection is ongoing. Results will allow for more robust characterization of the impact of learning amyloid PET results on individuals and describe the perspectives of investigators.
CONCLUSION: The pragmatic design of the disclosure process in ADNI-4 coupled with the novel participant and investigator data will inform future disclosure practices. This is especially important as disclosure of biomarker results expands in research and care.
CITATION:
C.M. Erickson ; J. Karlawish ; J.D. Grill ; K. Harkins ; S.M. Landau ; M.G. Rivera-Mindt ; O. Okonkwo ; R.C. Petersen ; P.S. Aisen ; M.W. Weiner ; E.A. Largent ; (2024): A Pragmatic, Investigator-Driven Process for Disclosure of Amyloid PET Scan Results to ADNI-4 Research Participants. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2024.33