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

曼哈顿北部拉丁裔接受阿尔茨海默病遗传风险信息的影响

• 批准号: 10538577
• 负责人: RUTH OTTMAN
• 金额: $ 265.64万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-02-15 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10538577
• 关键词: Acculturation; Address; Adult; Aging; Alzheimer' s Disease; Alzheimer' s disease risk; Anxiety; Apolipoprotein E; Behavioral; Belief System; Caribbean Hispanic; Caucasians; Characteristics; Cognition; Communities; Coping Skills; Counseling; Data; Disclosure; Disease; Distress; Dominican; Education; Enrollment; Ethnic Origin; Ethnic Population; European ancestry; Evaluation; Event; Family; Family history of; General Population; Genetic; Genetic Predisposition to Disease; Genetic Risk; Genetic Status; Genotype; Health behavior; Height; Homozygote; Incidence; Influentials; Intervention; Interview; Investigation; Late Onset Alzheimer Disease; Latino; Latino Population; Learning; Masks; Measures; Memory; Mental Depression; Methodology; Methods; Modeling; Modification; Outcome; Participant; Patient Self-Report; Pattern; Persons; Population; Prevention trial; Psychosocial Assessment and Care; Qualitative Research; Questionnaires; Randomized; Recording of previous events; Research; Risk; Risk Assessment; Risk Estimate; Risk Marker; Running; Sampling; Source; Stress and Coping; Study of Latinos; Subgroup; Surveys; Susceptibility Gene; Telephone; Testing; Time; Treatment/Psychosocial Effects; Washington; Work; adverse outcome; anxiety symptoms; apolipoprotein E-4; behavior change; contextual factors; coping; cultural values; depressive symptoms; design; emotion regulation; ethnic minority population; experience; genetic information; genetic predictors; genetic testing; high risk; improved; interest; lifetime risk; performance tests; presymptomatic testing; primary endpoint; psychosocial; response; secondary endpoint; social stigma; standardize measure

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.

项目概要 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。 曼哈顿北部拉丁裔人群中出现的包含 APOE 基因型的阿尔茨海默病 (LOAD)。我们 将进行一项纵向的、基于社区的研究，采用混合方法设计和多样化、细致入微和 对影响的敏感评估。参与者将被随机分配以了解他们终生的 LOAD 风险 基于 (a) 仅种族和家族史（基因型非公开组），或 (b) 相同因素 加上 APOE 基因型（基因型披露组）。将在 6 周、9 个月和 18 周时评估影响 风险评估后几个月。 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。主要终点是基因型之间的显着差异 披露组和非披露组在以下方面的得分：(1) 基因检测对 AD 量表的影响，(2) 影响 事件量表，(3) 成人元记忆问卷，以及 (4) 成人认知简要测试 电话。次要终点是抑郁或焦虑症状、健康状况的显着差异。 相关行为变化、AD 威胁感知以及风险信息的回忆和理解。我们将 还调查了反应变异性背后的因素，并探索了纵向反应的模式 遗传信息的接收。 在定性研究部分，我们将使用压力和应对理论框架来研究 接收个人 AD 风险信息的亲身经历。这将包括在每个时间点进行的检查 参与者理解和评估 AD 风险信息的方式，以及他们的外行如何影响这一信息 关于遗传学和 AD 疾病表征的信仰体系，以及他们采取的应对策略 应对风险、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这些策略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可以增强或 阻碍对AD风险信息的调整。 结果将有助于识别 APOE 测试不良后果的高风险人群，并告知 干预措施以帮助他们有效应对。这些信息对于定制遗传教育非常重要 或对拉丁裔的咨询干预。