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

Abstract

Detection of Alzheimer’s disease (AD) in an early stage is receiving increasing attention for a number of reasons, such as the failure of drug trials in more advanced disease stages, the demographic evolution, the financial impact of AD, and the approval of amyloid tracers for clinical use. Five focus group interviews with stakeholders (healthy elderly, informal caregivers, nursing staff, researchers, and clinicians) were conducted.. The verbatim transcripts were analysed via the Nvivo 11 software. Most stakeholder groups wanted to know their own amyloid PET scan result. However, differences occurred between FGs: two groups (informal caregivers and researchers) wanted to know, whilst in the three other groups (healthy elderly, nursing staff, and clinicians) FG members opted not to know or were still in doubt about their decision. Stakeholders provided insight into their reasons for wanting to know their amyloid PET scan result (e.g., the need for clarity, to inform relatives, to make arrangements), for not wanting to know their result, or why they were in doubt about their decision (e.g., fear of AD, not wanting to burden their social environment). Several advantages (e.g., to know what is going on with their health, to plan for the future) and disadvantages (e.g., absence of a disease modifying treatment, risks when undergoing tests) were mentioned as part of knowing their amyloid PET scan result. Certain considerations were clustered in a grey zone, in between advantage and disadvantage, such as the emotional consequences. Clinicians, researchers, and policymakers ought to be aware of the diversity of reasons for (not) wanting to know their result and how possible benefits and risks can be viewed differently. The current findings are of importance for future early diagnosis and disclosure of results in the research setting.