Stakeholders' Views on Early Diagnosis for Alzheimer's Disease, Clinical Trial Participation and Amyloid PET Disclosure: A Focus Group Study

Researchers conducted focus group interviews with five groups of stakeholders to ask about their views on receiving results of an amyloid positron emission tomography (PET) scan. Two stakeholder groups (informal caregivers and researchers) wanted to know their own amyloid PET scan result, while three groups (healthy elderly, nursing staff, and clinicians) opted not to know or were in doubt about their decision. Stakeholders provided insight into their reasons for wanting or not wanting to know their amyloid PET scan result. Some consequences of knowing one’s own amyloid PET scan result, such as potential emotional consequences, were clustered in a gray zone between advantageous and disadvantageous. The results suggest that there is diversity in how people view the potential consequences of knowing one’s amyloid PET scan result, with implications for future early diagnosis and disclosure of results in the research setting.

Vanderschaeghe G, Vandenberghe R, Dierickx K. Stakeholders' views on early diagnosis for Alzheimer's disease, clinical trial participation and amyloid PET disclosure: A focus group study. Journal of Bioethical Inquiry 2019;16(1):45-59.