Informing Alzheimer’s Biomarker Communication: Concerns and Understanding of Cognitively Unimpaired Adults During Amyloid Results Disclosure

Fred B. Ketchum, C. M. Erickson, K. E. Basche, N. A. Chin, M. L. Eveler, C. E. Conway, D. M. Coughlin, L. R. Clark
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Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

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阿尔茨海默氏症生物标志物交流的信息:认知能力未受损的成年人在淀粉样蛋白结果披露期间的担忧和理解
背景生物标记物结果越来越多地在研究和临床环境中披露,但人们对个人如何解释他们的结果或在披露访问期间提出的顾虑却知之甚少,而这些顾虑可能需要临床医生来解决,以确保适当的披露。方法威斯康星州阿尔茨海默氏症预防登记处的 52 名认知功能未受损的 65-89 岁老年人参加了披露子研究,他们在过去 18 个月中接受了淀粉样蛋白 PET 扫描。在确保做好心理准备后,经过培训的研究临床医生采用结构化协议披露淀粉样蛋白 PET 结果。在披露过程中,我们通过一系列实时问题提示来评估参与者对其生物标志物结果的理解程度、担忧和感知到的个人意义。结果34人的淀粉样蛋白结果未升高,18人的结果升高。参与者的平均年龄为 72.2 岁(65-81 岁不等);大多数为女性(64%)和非西班牙裔白人(92%)。参与者了解自己的结果(98%),未升高组和升高组对与他人分享、隐私、检测的准确性和风险等话题的回答相似。结果升高的参与者希望改变生活方式(78% 对 12%,p=0.01)和对结果有疑问(61% 对 30%,p=0.05)的可能性明显高于结果未升高的参与者。结果表明,参与者了解他们的生物标记物结果,并在披露过程中提出了一些临床和研究方案可以解决的问题。 这些发现可能是在临床和研究环境中为广泛披露生物标记物而开发有效流程时的重要考虑因素。
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The Journal of Prevention of Alzheimer's Disease
The Journal of Prevention of Alzheimer's Disease Medicine-Psychiatry and Mental Health
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9.20
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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.We hope that JPAD with your contribution will play a role in the development of Alzheimer prevention.
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