Abstract：
Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer\'s disease (AD) diagnosis. The Caregiver\'s Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE-IDEAS study and their care partners participated in a baseline survey and follow-up survey approximately 18 months later, supplemented by in-depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow-up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE-IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point-of-contact that should be leveraged to facilitate shared decision-making and person-centered longitudinal AD care.
摘要：
β淀粉样蛋白PET扫描是一种微创生物标志物，可告知阿尔茨海默病（AD）的诊断。照顾者的反应和经验（CARE）研究，一个想法补充，旨在了解PET扫描接受者及其护理伙伴关于扫描动机的经验，报告和解释结果，以及结果的影响。同意加入CARE-IDEAS研究的轻度认知障碍或痴呆症患者及其护理伙伴在大约18个月后参加了基线调查和随访调查。辅以对参与者子集的深入定性访谈。接受扫描并自愿进行后续研究的患者更有可能是男性，受过更好的教育，收入高于一般人口。调查信息与医疗保险数据合并。本文整合了一些CARE-IDEAS出版物的发现，并为实践和研究提供了启示。尽管大多数参与者准确地报告了扫描结果，他们经常对预后的意义感到困惑.一些参与者报告了结果的困扰，但是测量的抑郁没有显著变化，负担，或者随着时间的推移经济压力。许多受访者希望获得有关预后和支持资源的更多信息。扫描结果与服务使用随时间的变化没有差异。研究结果表明，临床医生需要精心设计和测试的工具来讨论扫描及其结果的风险和益处。以及支持患者和护理合作伙伴后续规划的资源。扫描结果的学习提供了一个接触点，应利用该接触点来促进共享决策和以人为中心的纵向AD护理。
