Fred B. Ketchum, Department of Neurology, School of Medicine and Public Health, University of Wisconsin, Madison, 1685 Highland Avenue, Madison, WI 53705, USA, Phone (608) 265-5523, Fax (608) 263-0412,
J Prev Alzheimers Dis. 2024;11(6):1572-1580. doi: 10.14283/jpad.2024.151.
Biomarker results are increasingly disclosed in research and clinical settings, but less is known about how individuals interpret their results or concerns raised during the disclosure visit that may need to be addressed by clinicians to ensure appropriate disclosure.
Fifty-two cognitively unimpaired older adults aged 65 to 89 years old from the Wisconsin Registry for Alzheimer's Prevention, who had undergone an amyloid PET scan in the previous 18 months, were enrolled in the disclosure substudy. After ensuring psychological readiness, trained study clinicians disclosed amyloid PET results using a structured protocol. We assessed participants' level of understanding, concerns, and the perceived personal significance of their biomarker results during the disclosure visit through a series of question prompts in real-time.
Thirty-four received a non-elevated amyloid result and 18 received an elevated result. The average age was 72.2 years (range 65-81); most were women (64%) and non-Hispanic White (92%). Participants understood their results (98%), and both non-elevated and elevated groups provided similar responses around topics of sharing with others, privacy, accuracy of testing, and risk. Participants with elevated results were significantly more likely than those with non-elevated results to want to change their lifestyle (78% vs 12%, p=<0.01) and have questions about their results (61% vs 30%, p=0.05). Participants interpreted the personal significance of results in terms of several themes relating to individual risk status, emotional impact, whether the result was expected, and prevention/planning.
Results show that participants understand their biomarker results, and have a number of concerns during the disclosure process that clinical and research protocols could address. en These findings could be important considerations as effective processes are developed for widespread biomarker disclosure in clinical and research settings.
生物标志物的结果在研究和临床环境中越来越多地被披露，但人们对个人如何解释这些结果或在披露访问期间提出的关注知之甚少，这些关注可能需要临床医生解决，以确保适当的披露。
52 名认知正常的年龄在 65 至 89 岁之间的老年人来自威斯康星州阿尔茨海默病预防登记处，他们在过去 18 个月内接受了淀粉样 PET 扫描，被纳入了披露子研究。在确保心理准备后，经过培训的研究临床医生使用结构化方案披露了淀粉样 PET 结果。我们通过一系列实时问题提示评估了参与者在披露访问期间对结果的理解程度、关注问题以及对生物标志物结果的个人意义的看法。
34 名参与者的结果为非升高型，18 名参与者的结果为升高型。平均年龄为 72.2 岁（范围为 65-81 岁）；大多数是女性（64%）和非西班牙裔白人（92%）。参与者理解他们的结果（98%），非升高组和升高组在与他人分享、隐私、检测准确性和风险相关的主题上提供了相似的回答。与非升高组相比，升高组的参与者更有可能希望改变他们的生活方式（78%比 12%，p<0.01）和对结果提出疑问（61%比 30%，p=0.05）。参与者从与个人风险状况、情绪影响、结果是否预期以及预防/计划有关的几个主题来解释结果的个人意义。
研究结果表明，参与者理解他们的生物标志物结果，并且在披露过程中有许多关注问题，临床和研究方案可以解决这些问题。这些发现可能是在临床和研究环境中广泛披露生物标志物时开发有效流程的重要考虑因素。
