journal articles
THE ROOM WHERE IT HAPPENS: CLINICIAN REFLECTIONS ON RETURNING PRECLINICAL ALZHEIMER’S BIOMARKER RESULTS TO RESEARCH PARTICIPANTS
C.M. Erickson, N.A. Chin, F.B. Ketchum, M.L. Eveler, C.E. Conway, D.M. Coughlin, L.R. Clark
J Prev Alz Dis 2024;1(11):1-6
Disclosing Alzheimer’s disease (AD) biomarkers to research participants is a growing practice. Here, we aim to synthesize the experiences of clinicians leading preclinical AD biomarker disclosure. Semi-structured interviews were conducted individually with each of the four clinicians conducting biomarker disclosure as a part of a longitudinal, observational AD cohort study. Study clinicians emphasized the importance of participant education, having adequate time available for the disclosure visit, and forms to facilitate disclosure. To train and support future clinicians conducting AD biomarker disclosure, our study clinicians highlighted providing information about AD and biomarkers, shadowing a disclosure visit, having team debriefing sessions, and collating a frequently asked questions document. To date, this is the first characterization of clinician reflections on disclosing AD biomarker result to cognitively unimpaired research participants. As more clinicians in research or clinical settings seek to disclose AD biomarker results, best practices for training clinicians to lead disclosure are necessary.
CITATION:
C.M. Erickson ; N.A. Chin ; F.B. Ketchum ; M.L. Eveler ; C.E. Conway ; D.M. Coughlin ; L.R. Clark (2023): The Room Where It Happens: Clinician Reflections on Returning Preclinical Alzheimer’s Biomarker Results to Research Participants. The Journal of Prevention of Alzheimer’s Disease (JPAD). http://dx.doi.org/10.14283/jpad.2023.88