发生的房间:临床医生将临床前阿尔茨海默氏症生物标志物结果反馈给研究参与者的思考。

IF 8.5 3区 医学 Q1 CLINICAL NEUROLOGY Jpad-Journal of Prevention of Alzheimers Disease Pub Date : 2024-01-01 DOI:10.14283/jpad.2023.88
C M Erickson, N A Chin, F B Ketchum, M L Eveler, C E Conway, D M Coughlin, L R Clark
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引用次数: 0

摘要

向研究参与者披露阿尔茨海默病(AD)生物标志物的做法越来越多。在此,我们旨在总结临床前阿兹海默症生物标记物披露的临床医生的经验。在一项纵向观察性 AD 队列研究中,我们对四位进行生物标记物披露的临床医生分别进行了半结构化访谈。研究中的临床医生强调了对参与者进行教育、为披露访问提供充足的时间和便于披露的表格的重要性。为了培训和支持未来的临床医生进行AD生物标记物披露,我们的研究临床医生强调了提供有关AD和生物标记物的信息、跟踪披露访问、团队汇报会以及整理常见问题文档的重要性。迄今为止,这是临床医生对向认知能力未受损的研究参与者披露注意力缺失症生物标记物结果的首次反思。随着越来越多的临床医生在研究或临床环境中寻求披露AD生物标记物结果,培训临床医生引导披露的最佳实践是必要的。
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The Room Where It Happens: Clinician Reflections on Returning Preclinical Alzheimer's Biomarker Results to Research Participants.

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.

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来源期刊
自引率
7.80%
发文量
85
期刊介绍: The JPAD « Journal of Prevention of Alzheimer’Disease » will publish reviews, original research articles and short reports to improve our knowledge in the field of Alzheimer prevention including : neurosciences, biomarkers, imaging, epidemiology, public health, physical cognitive exercise, nutrition, risk and protective factors, drug development, trials design, and heath economic outcomes. JPAD will publish also the meeting abstracts from Clinical Trial on Alzheimer Disease (CTAD) and will be distributed both in paper and online version worldwide.
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