The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research.
The importance of the dyad: Participant perspectives on sharing biomarker results in Alzheimer's disease research.
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DOI：
10.1002/trc2.12416
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发表时间：
2023-07
影响因子：
4.8
通讯作者：
Clark, Lindsay
中科院分区：
文献类型：
--
作者：
Ketchum, Fred B;Chin, Nathaniel A;Erickson, Claire;Lambrou, Nickolas H;Basche, Kristin;Gleason, Carey E;Clark, Lindsay
在阿尔茨海默病（AD）的无症状“临床前”阶段，异常的生物标志物表明发生认知障碍的风险。生物标志物信息越来越多地在研究环境中向参与者披露，未来生物标志物检测和结果披露将在临床环境中实施。生物标志物的披露具有潜在的社会心理益处和危害，影响受影响的个人及其支持人员。关于研究参与者与谁分享他们的结果，以及制定披露协议和披露后资源所必需的信息，数据有限。此外，现有研究主要在白色人群中进行，限制了对未来临床人群的适用性。我们招募了329名成人（184名非西班牙裔白色人和145名黑人/非裔美国人），他们以前参加过AD研究。在回顾了一个描述假设的生物标志物研究的小插曲后，参与者表示他们预期愿意与亲人分享生物标志物结果，以及他们预期其他人的反应。使用混合方法分析，我们确定了与分享结果的意愿相关的反应。大多数人（78.7%）愿意与支持者分享他们的结果。许多人（59.6%）认为分享并不难，大多数人（90.6%）认为他们的亲人会支持他们。分享的最常见原因是为未来可能的AD做准备（41.0%的受访者），而不分享的最常见原因是避免让亲人担心（4.8%的受访者）。共有7.3%的受访者表示不确定分享的原因。参与者对分享结果的兴趣支持将支持人员整合到AD生物标志物研究中，并可能有助于最大限度地提高参与者的潜在利益。与研究参与者和支持人员的这种“二人组”沟通可以提高研究参与度，并通过澄清沟通偏好和支持人员对心理社会结果的影响，帮助准备实施临床生物标志物检测。
In the asymptomatic “preclinical” phase of Alzheimer's disease (AD), abnormal biomarkers indicate risk for developing cognitive impairment. Biomarker information is increasingly being disclosed to participants in research settings, and biomarker testing and results disclosure will be implemented in clinical settings in the future. Biomarker disclosure has potential psychosocial benefits and harms, impacting affected individuals and their support person(s). Limited data are available about with whom research participants share their results, information that will be necessary to develop disclosure protocols and post‐disclosure resources. Additionally, existing research has been conducted in largely White cohorts, limiting applicability to future clinical populations. We enrolled a diverse cohort of 329 adults (184 non‐Hispanic White and 145 Black/African American individuals) who previously participated in AD research. After reviewing a vignette describing a hypothetical biomarker research study, participants indicated their anticipated willingness to share biomarker results with loved ones, and what reactions they anticipated from others. Using mixed‐methods analysis, we identified responses related to willingness to share results. A majority (78.7%) were willing to share their results with support persons. Many (59.6%) felt it would not be difficult to share, and most (90.6%) believed their loved ones would be supportive. The most common reasons for sharing were to prepare for possible future AD (41.0% of respondents), while the most common reason for not sharing was to avoid worrying loved ones (4.8% of respondents). A total of 7.3% of respondents related reasons regarding being unsure about sharing. Participants’ interest in sharing results supports integrating support persons into AD biomarker research, and may help maximize potential benefits for participants. Communicating with this "dyad" of research participant and support person(s) may improve involvement in research, and help prepare for implementation of clinical biomarker testing by clarifying communication preferences and the influence of support persons on psychosocial outcomes.