Lindsay Clark, PhD, Clinical Science Center, 600 Highland Ave. J5/1 Mezzanine, Madison, WI 53792, USA,
J Prev Alzheimers Dis. 2024;11(1):1-6. doi: 10.14283/jpad.2023.88.
Disclosing Alzheimer's disease (AD) biomarkers to research participants is a growing practice. Here, we aim to synthesize the experiences of clinicians leading preclinical AD biomarker disclosure. Semi-structured interviews were conducted individually with each of the four clinicians conducting biomarker disclosure as a part of a longitudinal, observational AD cohort study. Study clinicians emphasized the importance of participant education, having adequate time available for the disclosure visit, and forms to facilitate disclosure. To train and support future clinicians conducting AD biomarker disclosure, our study clinicians highlighted providing information about AD and biomarkers, shadowing a disclosure visit, having team debriefing sessions, and collating a frequently asked questions document. To date, this is the first characterization of clinician reflections on disclosing AD biomarker result to cognitively unimpaired research participants. As more clinicians in research or clinical settings seek to disclose AD biomarker results, best practices for training clinicians to lead disclosure are necessary.
披露阿尔茨海默病(AD)生物标志物给研究参与者是一种日益增长的做法。在这里,我们旨在综合临床医生在进行 AD 生物标志物预临床披露方面的经验。对每位进行生物标志物披露的四位临床医生进行了半结构化访谈,作为一项纵向、观察性 AD 队列研究的一部分。研究临床医生强调了对参与者进行教育、为披露访问提供足够的时间以及便于披露的表格的重要性。为了培训和支持未来进行 AD 生物标志物披露的临床医生,我们的研究临床医生强调提供有关 AD 和生物标志物的信息、模拟披露访问、进行团队汇报会议以及整理常见问题解答文件。到目前为止,这是首次对临床医生对向认知正常的研究参与者披露 AD 生物标志物结果的反思进行描述。随着越来越多的研究或临床环境中的临床医生寻求披露 AD 生物标志物结果,有必要为培训临床医生进行披露制定最佳实践。