Impacts of receiving Alzheimer's disease genetic risk information among Latinos in northern Manhattan

项目总结 这项研究将评估接受晚期风险评估的心理社会和行为影响。 在曼哈顿北部的拉丁裔中发病的阿尔茨海默病(LOAD)合并APOE基因。我们 将进行以社区为基础的纵向研究，采用混合方法设计和多样化、细致入微的 对影响的敏感评估。参与者将被随机分配，以了解他们的终生负荷风险 基于(A)种族和家族史(基因保密组)，或(B)相同的因素 加APOE基因(基因公开组)。影响将在6周、9个月和18周进行评估 在风险评估之后的几个月。 在定量研究部分，我们将评估心理社会结果，记忆测试表现， 以及与健康相关的行为。主要终点在不同的基因型之间有显著差异 公开组和不公开组在以下方面的得分：(1)基因检测在AD量表中的影响，(2)影响 事件量表，(3)成人元记忆问卷，(4)成人认知简明测验 电话。次要终点是抑郁或焦虑症状的显著差异，健康- 相关行为改变、感知AD威胁、回忆和理解风险信息。我们会 也要调查影响反应可变性的因素，并探索纵向反应的模式 遗传信息的接收。 在定性研究部分，我们将使用压力和应对的理论框架来调查 有接收个人AD风险信息的亲身经历。这将包括在每个时间点检查 参与者理解和评估AD风险信息的方式，这是如何受他们的层面影响的 关于遗传学和阿尔茨海默病表现的信念系统，以及它们采取的应对策略 应对它们的风险、其感知的影响以及它可能带来的适应性挑战。我们还将评估 应对策略如何随时间变化以及与之相关的背景因素和条件 变化，包括拉丁裔文化价值观和规范；以及不同的应对策略如何加强或 阻碍对AD风险信息的调整。 结果将有助于识别APOE检测不良后果的高危人群，并告知 帮助他们有效应对的干预措施。这些信息将对定制遗传教育非常重要。 或者为拉丁裔提供咨询干预。

PROJECT SUMMARY This study will assess the psychosocial and behavioral impacts of receiving a risk assessment for late- onset Alzheimer's disease (LOAD) incorporating APOE genotypes among Latinos in northern Manhattan. We will conduct a longitudinal, community-based study with a mixed methods design and diverse, nuanced, and sensitive assessments of impact. Participants will be randomized to learn about their lifetime risk of LOAD based either on (a) ethnicity and family history alone (genotype nondisclosure group), or (b) the same factors plus APOE genotype (genotype disclosure group). Impacts will be evaluated at 6 weeks, 9 months, and 18 months after risk assessment. In the quantitative study component, we will assess psychosocial outcomes, memory test performance, and health-related behaviors. The primary endpoints are a significant difference between the genotype disclosure and nondisclosure groups' scores on: (1) the Impact of Genetic Testing in AD scale, (2) the Impact of Events Scale, (3) the Metamemory in Adulthood Questionnaire, and (4) the Brief Test of Adult Cognition by Telephone. The secondary endpoints are significant differences in symptoms of depression or anxiety, health- related behavior changes, perceived threat of AD, and recall and understanding of risk information. We will also investigate factors that underlie variability in response and explore the patterns of longitudinal response to the receipt of genetic information. In the qualitative study component, we will use a stress and coping theoretical framework to investigate the lived experience of receiving personal AD risk information. This will include examination, at each time point, of the ways in which participants understand and appraise AD risk information, how this is influenced by their lay belief systems about genetics and AD illness representations, and what coping strategies they enact to contend with their risk, its perceived implications, and the adaptive challenges it may pose. We will also assess how coping strategies change over time and the contextual factors and conditions associated with those changes, including Latino cultural values and norms; and how different coping strategies may enhance or impede adjustment to AD risk information. The results will help identify persons at high risk for adverse consequences of APOE testing and inform interventions to assist them to cope effectively. The information will be important for tailoring genetic education or counseling interventions to Latinos.