From the Department of Medical Ethics and Health Policy (E.A.L., J.K.), University of Pennsylvania Perelman School of Medicine, Philadelphia; Department of Psychiatry and Human Behavior (J.D.G.), and Department of Neurobiology and Behavior (J.D.G.), University of California, Irvine; Department of Neurology (K.O.B., D.W., J.K.), and Department of Medicine (K.H., J.K.), University of Pennsylvania Perelman School of Medicine, Philadelphia.
Neurology. 2023 May 23;100(21):1010-1019. doi: 10.1212/WNL.0000000000206891. Epub 2023 Jan 31.
Three pathologic processes are characteristic of Alzheimer disease (AD): β-amyloid, hyperphosphorylated tau, and neurodegeneration. Our understanding of AD is undergoing a transformation due to our ability to measure biomarkers of these processes across different stages of cognitive impairment. There is growing interest in using AD biomarker tests in care and research and, with this, a growing need for guidance on how to return these sensitive results to patients and participants. Here, we propose a 5-step approach informed by clinical and research experience designing and implementing AD biomarker disclosure processes, extant evidence describing how individuals react to AD biomarker information, ethics, law, and the literature on breaking bad news. The clinician should (1) determine the appropriateness of AD biomarker testing and return of results for the particular patient or research participant. If testing is appropriate, the next steps are to (2) provide pretest education and seek consent for testing from the individual and their support person, (3) administer testing, (4) return the results to the individual and their support person, and (5) follow-up to promote the recipient's well-being.
三种病理过程是阿尔茨海默病(AD)的特征:β-淀粉样蛋白、过度磷酸化的 tau 蛋白和神经退行性变。由于我们能够在认知障碍的不同阶段测量这些过程的生物标志物,我们对 AD 的理解正在发生转变。人们越来越感兴趣在护理和研究中使用 AD 生物标志物测试,随着这一点,越来越需要关于如何将这些敏感结果返回给患者和参与者的指导。在这里,我们提出了一种五步方法,该方法基于设计和实施 AD 生物标志物披露流程的临床和研究经验、描述个体如何对 AD 生物标志物信息做出反应的现有证据、伦理学、法律以及关于打破坏消息的文献。临床医生应 (1) 确定对特定患者或研究参与者进行 AD 生物标志物测试和结果返回的适当性。如果测试合适,下一步是 (2) 向个人及其支持人员提供测试前教育并寻求测试同意,(3) 进行测试,(4) 将结果返回给个人及其支持人员,以及 (5) 进行随访以促进接受者的福祉。