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本文引用的文献

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Designing and implementing the IDEAL Study: A randomized clinical trial of genotype disclosure for late-onset Alzheimer's disease in an urban Latino population.设计与实施IDEAL研究:一项针对城市拉丁裔人群晚发性阿尔茨海默病进行基因分型披露的随机临床试验。
Alzheimers Dement (N Y). 2024 Dec 2;10(4):e70016. doi: 10.1002/trc2.70016. eCollection 2024 Oct-Dec.
2
2024 Alzheimer's disease facts and figures.2024 年阿尔茨海默病事实和数据。
Alzheimers Dement. 2024 May;20(5):3708-3821. doi: 10.1002/alz.13809. Epub 2024 Apr 30.
3
Immediate Reactions to Alzheimer Biomarker Disclosure in Cognitively Unimpaired Individuals in a Global Truncated Randomized Trial.全球截断随机试验中认知未受损个体对阿尔茨海默病生物标志物披露的即时反应
Neurol Clin Pract. 2024 Apr;14(2):e200265. doi: 10.1212/CPJ.0000000000200265. Epub 2024 Jan 12.
4
Apolipoprotein E Genetic Testing in a New Age of Alzheimer Disease Clinical Practice.阿尔茨海默病临床实践新时代的载脂蛋白E基因检测
Neurol Clin Pract. 2024 Apr;14(2):e200230. doi: 10.1212/CPJ.0000000000200230. Epub 2024 Jan 5.
5
Anticipated Psychological or Behavioral Reactions to Learning Alzheimer Biomarker Results: Associations With Contextual Factors.得知阿尔茨海默病生物标志物检测结果后的预期心理或行为反应:与情境因素的关联。
Alzheimer Dis Assoc Disord. 2023;37(4):282-289. doi: 10.1097/WAD.0000000000000586. Epub 2023 Oct 12.
6
FDA Approval of Aduhelm Paves a New Path for Alzheimer's Disease.美国食品药品监督管理局批准阿杜海姆为阿尔茨海默病治疗开辟了新途径。
ACS Chem Neurosci. 2021 Aug 4;12(15):2714-2715. doi: 10.1021/acschemneuro.1c00394. Epub 2021 Jul 14.
7
Biomarkers for Alzheimer's Disease Early Diagnosis.用于阿尔茨海默病早期诊断的生物标志物
J Pers Med. 2020 Sep 4;10(3):114. doi: 10.3390/jpm10030114.
8
Cognitively unimpaired adults' reactions to disclosure of amyloid PET scan results.认知正常成年人对淀粉样 PET 扫描结果披露的反应。
PLoS One. 2020 Feb 13;15(2):e0229137. doi: 10.1371/journal.pone.0229137. eCollection 2020.
9
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Degener Neurol Neuromuscul Dis. 2019 Dec 24;9:123-130. doi: 10.2147/DNND.S228939. eCollection 2019.
10
"Well, good luck with that": reactions to learning of increased genetic risk for Alzheimer disease.“好吧,祝你好运”:得知阿尔茨海默病遗传风险增加后的反应。
Genet Med. 2018 Nov;20(11):1462-1467. doi: 10.1038/gim.2018.13. Epub 2018 Mar 8.

曼哈顿北部拉丁裔对阿尔茨海默病易感性基因检测的预期反应。

Anticipated Responses to Genetic Testing for Alzheimer's Disease Susceptibility among Latinos in Northern Manhattan.

作者信息

Meng Alicia, Cabán María, Tran Evelyn, Wetmore John B, Ottman Ruth, Siegel Karolynn

机构信息

Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, New York, NY, USA.

Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York, NY, USA.

出版信息

J Community Health. 2025 Jun;50(3):472-482. doi: 10.1007/s10900-024-01434-6. Epub 2024 Dec 25.

DOI:10.1007/s10900-024-01434-6
PMID:39720972
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12068976/
Abstract

Alzheimer's disease (AD) is a debilitating neurodegenerative illness that has become a growing concern for older adults. As such, apolipoprotein E (APOE) genetic testing has become more commonly used to identify individuals' susceptibility to AD. An underrepresented population in AD research, Latinos will be disproportionately affected by AD in the coming decades. To better aid efforts in education and genetic risk counseling for Latino populations, we must first understand the anticipated psychological and behavioral consequences of APOE genetic risk counseling. We conducted semi-structured interviews with 216 Latinos between the ages of 40 and 64 (average age = 53 years) in northern Manhattan to ascertain their hypothetical reactions to learning that they had a higher risk of developing AD compared to other Latinos within their community. Responses were categorized as emotional, practical, and mixed responses. Among our sample, women were more likely to anticipate an emotional response to hearing that they had a higher risk of AD, and participants above the age of 60 were more likely to anticipate disclosing their risk information to immediate family members. Findings support the tailoring of genetic risk counseling sessions across different ethnic groups, genders and age groups. Future work may include the development of psychological and practical support tools for Latinos seeking APOE genetic testing and counseling.

摘要

阿尔茨海默病(AD)是一种使人衰弱的神经退行性疾病,已日益成为老年人关注的问题。因此,载脂蛋白E(APOE)基因检测已更普遍地用于确定个体患AD的易感性。拉丁裔在AD研究中是代表性不足的人群,在未来几十年里,他们受AD的影响将尤为严重。为了更好地帮助拉丁裔人群开展教育和遗传风险咨询工作,我们必须首先了解APOE基因风险咨询可能带来的心理和行为后果。我们对曼哈顿北部年龄在40至64岁(平均年龄 = 53岁)之间的216名拉丁裔进行了半结构化访谈,以确定他们在得知自己患AD的风险高于社区内其他拉丁裔时可能产生的反应。这些反应被分为情绪反应、实际反应和混合反应。在我们的样本中,女性更有可能预期在听到自己患AD的风险较高时会产生情绪反应,而60岁以上的参与者更有可能预期会将自己的风险信息透露给直系亲属。研究结果支持针对不同种族、性别和年龄组量身定制基因风险咨询服务。未来的工作可能包括为寻求APOE基因检测和咨询的拉丁裔开发心理和实际支持工具。