Return of Amyloid Imaging Research Results in MCI

描述（由申请人提供）：阿尔茨海默病（AD）的死前病理测试在认知衰老和AD的研究中越来越受欢迎。由于担心来自此类测试的信息可能被误解、对心理有害以及临床意义不明确，通常对研究参与者隐瞒了阿尔茨海默病病理的死前测试结果。然而，随着像脑淀粉样蛋白成像这样的测试的可靠性和潜在的临床意义变得清晰，迫切需要重新审视单方面向研究参与者隐瞒这些信息的做法，并确定负责任的方法来传达个人结果。淀粉样蛋白成像结果可能与轻度认知障碍（MCI）特别相关，越来越多的证据表明，尽管没有干预措施来改变一个人的临床病程，但这种测试可能提供有价值的预后和计划信息。我们的初步工作表明，MCI的研究参与者及其家庭成员在使用我们跨学科团队开发的标准化方法时，能够接受并理解有关淀粉样蛋白成像的目的、结果和含义的信息。在这项工作的基础上，由一名早期研究者领导的针对PA-11-180的研究，将对至少40名MCI护理组（患者+家庭成员）和一组匹配的对照组（非MCI护理组）进行随访，并提供接受患者淀粉样蛋白成像研究结果的选择。目的1将检验接受淀粉样蛋白成像研究结果将如何影响患者和护理伙伴对MCI的理解和应对自我效能感的假设。目标2将使用一系列定性访谈和内容分析来确定信息和支持

DESCRIPTION (provided by applicant): Pre mortem tests of Alzheimer's disease (AD) pathology are increasingly popular in research on cognitive aging and AD. Due to concerns that information from such tests may be misunderstood, psychologically harmful, and of unclear clinical significance, results of pre mortem tests of AD pathology have typically been withheld from research participants. However, as the reliability and potential clinical significance of test like brain amyloid imaging have become clear, there is a pressing need to revisit the practice of unilaterally withholding such information from research participants and identify responsible approaches to communicating individual results. Amyloid imaging results may be particularly relevant to mild cognitive impairment (MCI), a population for whom a growing body of evidence suggests that such testing may provide valuable prognostic and planning information, despite the unavailability of interventions to alter one's clinical course. Our preliminary work suggests that research participants with MCI and their family members are receptive to and capable of understanding information about the purpose, results, and implications of amyloid imaging when presented using a standardized approach developed by our interdisciplinary team. Building on this work, the proposed study, led by an early stage investigator in response to PA-11-180, will follow a well characterized sample of at least 40 MCI care dyads (patient + family member) who are, and a matched comparison group of dyads who are not, presented with the option of receiving the patient's amyloid imaging research results. Aim 1 will test hypotheses that examine how receiving amyloid imaging research results will impact understanding of, and perceived self-efficacy for coping with, MCI among both patients and care partners. Aim 2 will use a series of qualitative interviews and content analysis to identify the information and support needs of MCI care dyads who are offered amyloid imaging research results. A third, exploratory aim will document, within the subgroup of MCI care dyads who receive amyloid imaging research results, the frequency, nature, and range of psychological and behavioral responses to receiving such results. In addition to having implications for research conduct, our findings may also inform clinical practice as clinicians begin to incorporate amyloid imaging into clinical evaluation and respond to patient requests for such imaging.