Public Perceptions of Presymptomatic Testing for Alzheimer Disease
Public Perceptions of Presymptomatic Testing for Alzheimer Disease
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DOI：
10.1016/j.mayocp.2014.05.016
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发表时间：
2014-10-01
影响因子：
8.9
通讯作者：
Robert, Jason S.
中科院分区：
文献类型：
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作者：
Caselli, Richard J.;Langbaum, Jessica;Robert, Jason S.
目的：探讨症状前阿尔茨海默病（AD）相关基因和生物标志物检测的自我表达意愿、预期反应和基本认识。患者和方法：阿尔茨海默氏症预防注册是一个在线社区，年满18岁的人对阿尔茨海默氏症预防研究感兴趣，纯粹是为了提供信息，或者被考虑可能参与未来的研究。从2012年11月1日到2013年6月20日，有关症状前测试和在线多项选择调查的信息发布在注册网站上。结果：在4036名受访者中，80.8%（3195/3952）的人希望在保险支付的情况下进行基因检测，58.7%（2261/3851）的人希望至少花费100美元进行基因检测。共有80.2%（3112/3879）的人希望进行生物标志物检测。如果是AD高危人群，90.5%（3478/3841）的人赞同他们会“追求更健康的生活方式”，但11.6%（427/3706）的人赞同“认真考虑自杀”。13.1%（500/3812）和32.6%（1255/3848）的人不正确地理解基因检测阳性的含义，他们没有将生物标志物检测阳性的结果视为阿尔茨海默病风险增加或存在的证据。结论：尽管我们努力提高公众对阿尔茨海默病的认识，但我们的调查结果表明，公众需要更多的教育。感兴趣的患者可能应该接受心理筛查，以确定那些有不良心理后果高风险的患者，并应将症状前测试结果的披露与切实的建设性行动计划联系起来，例如健康生活方式的改变、长期护理计划，以及在有条件和适当的情况下参与研究试验。(C) 2014年梅奥医学教育与研究基金会
Objective: To explore the self-expressed desire for, envisioned reaction to, and basic understanding of presymptomatic Alzheimer disease (AD)- related genetic and biomarker tests.Patients and Methods: The Alzheimer's Prevention Registry is an online community of people at least 18 years of age who are interested in AD prevention research for purely informational purposes or to be considered for possible research participation in future studies. Information about presymptomatic testing and an online multiple choice format survey were posted from November 1, 2012, through June 20, 2013, on the registry website.Results: Of 4036 respondents, 80.8% (3195/3952) wanted genetic testing if paid by insurance and 58.7% (2261/3851) if it would cost them at least $100. A total of 80.2% (3112/3879) wanted biomarker testing. If at high risk for AD, 90.5% (3478/3841) endorsed that they would "pursue a healthier lifestyle," but 11.6% (427/3706) endorsed " seriously consider suicide." The implication of a positive genetic test result was incorrectly understood by 13.1% (500/3812) and 32.6% (1255/3848) failed to view a positive biomarker test result as evidence of increased risk for or the presence of AD.Conclusion: Despite efforts to increase public awareness of AD, our survey results suggest that greater education of the public is needed. Interested patients should probably undergo psychological screening to identify those at high risk of adverse psychological outcomes, and disclosure of presymptomatic test results should be anchored to tangible constructive action plans, such as healthy lifestyle changes, long-term care planning, and, when available and appropriate, participation in research trials. (C) 2014 Mayo Foundation for Medical Education and Research