AbstractBackgroundAmyloid PET scans allow for the visualization of amyloid plaque in the brain, which, in the context of mild cognitive impairment (MCI), signal heightened risk for progression to Alzheimer’s dementia (AD). Disclosure of such results can profoundly impact patients as well as their family care partners. The purpose of this study was to examine the role and perspectives of family care partners during and after the return of amyloid PET results.MethodWe used qualitative description to analyze transcripts of audio‐recorded results disclosure sessions and 4‐week follow‐up interviews of participants with MCI and their care partners who were randomized to the disclosure arm of the Return of Amyloid Imaging Scan Results (RAISR) trial. Focusing on care partners (n = 36), we conducted line by line coding and thematic analysis with the goals of 1) categorizing the frequency and nature of the questions raised by care partners during the open‐ended segment of the disclosure sessions, and 2) describing care partners’ perceptions of their loved one’s results in the month following disclosure.ResultAt disclosure, 13 families received positive for amyloid, and 21 received negative scan results. Care partners of those learning of amyloid positivity asked approximately twice as many questions as those receiving negative results (averaging 5.6 vs. 2.8 questions per session). Seven themes were identified in the questions: study logistics, AD/AD care, result clarification, next steps given result, outside resources, requests for scan images, and “other.” The vast majority of questions fell under AD/AD care (n = 47), followed by questions about study logistics (n = 24). The overarching theme of the week 4 interviews was a general sense of acceptance of the scan results. However, instances of inadequate comprehension of the scans’ implications were noted, particularly among partners of amyloid negative patients, some of whom interpreted the result to mean that their loved one’s MCI was nonprogressive.ConclusionFamily care partners play active roles in eliciting information and clarification during amyloid PET results disclosure. However, our findings regarding care partners of amyloid negative patients affirm that disclosing clinicians should not assume that those who ask fewer questions have an adequate understanding of the information presented.
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