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

项目摘要 这项研究将评估接受风险评估的心理和行为影响， 在北方曼哈顿的拉丁美洲人中合并APOE基因型的阿尔茨海默病（LOAD）。我们 将进行一项纵向的，以社区为基础的研究，采用混合方法设计， 敏感的影响评估。受试者将被随机分组，以了解其LOAD的终生风险 基于（a）仅种族和家族史（基因型未披露组），或（B）相同因素 加APOE基因型（基因型披露组）。将在6周、9个月和18个月时评估影响 风险评估后的几个月。 在定量研究部分，我们将评估心理社会结果，记忆测试表现， 和健康相关的行为。主要终点是基因型之间的显着差异 披露和不披露组的得分：（1）基因检测在AD量表中的影响，（2） 事件量表，（3）成年期元记忆问卷，（4）成人认知的简短测试， 电话.次要终点是抑郁或焦虑症状、健康状况、 相关行为变化、感知的AD威胁以及对风险信息的回忆和理解。我们将 还调查了反应可变性的基础因素，并探索了纵向反应的模式， 遗传信息的接收。 在质性研究部分，我们将使用压力和应对理论框架来调查 接受个人AD风险信息的生活经历。这将包括在每个时间点检查 参与者理解和评价AD风险信息的方式，以及这如何受到他们的层的影响 关于遗传学和AD疾病表征的信仰体系，以及他们制定的应对策略， 应对其风险、其可感知的影响以及其可能带来的适应性挑战。我们亦会评估 应对策略如何随着时间的推移而变化，以及与之相关的环境因素和条件 变化，包括拉丁美洲的文化价值观和规范;以及不同的应对策略如何提高或 阻碍了对AD风险信息的调整。 这些结果将有助于识别APOE检测不良后果的高风险人群，并为 采取干预措施，帮助他们有效科普。这些信息对于定制遗传教育将是重要的 或对拉丁裔人进行咨询干预。

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.