Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Kapucijnenvoer 35, blok D box 7001, 3000, Leuven, Belgium.
Laboratory for Cognitive Neurology, Department of Neurosciences, KU Leuven, Leuven, Belgium.
J Bioeth Inq. 2019 Mar;16(1):45-59. doi: 10.1007/s11673-019-09901-9. Epub 2019 Mar 13.
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.
由于多种原因，如在更晚期疾病阶段的药物试验失败、人口结构演变、AD 的财务影响以及淀粉样蛋白示踪剂的临床批准，早期检测阿尔茨海默病（AD）越来越受到关注。对利益相关者（健康老年人、非正式护理人员、护理人员、研究人员和临床医生）进行了 5 次焦点小组访谈。对原始记录进行了 Nvivo 11 软件分析。大多数利益相关者群体都希望了解自己的淀粉样蛋白 PET 扫描结果。然而，不同的焦点小组存在差异：两个群体（非正式护理人员和研究人员）希望了解，而在其他三个群体（健康老年人、护理人员和临床医生）中，小组参与者选择不了解或对自己的决定仍有疑虑。利益相关者深入了解了他们希望了解淀粉样蛋白 PET 扫描结果的原因（例如，需要明确、告知亲属、做出安排）、不想了解结果的原因，或对自己的决定有疑虑的原因（例如，害怕 AD、不想给社交环境带来负担）。参与者还提到了了解淀粉样蛋白 PET 扫描结果的一些优势（例如，了解自己的健康状况、规划未来）和劣势（例如，缺乏疾病修饰治疗、测试时的风险）。某些考虑因素被归为灰色地带，处于优势和劣势之间，例如情绪后果。临床医生、研究人员和政策制定者应该意识到（不）希望了解自己的结果的原因的多样性，以及如何看待可能的利益和风险。这些发现对于未来在研究环境中进行早期诊断和披露结果具有重要意义。
