Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure

项目摘要：阿尔茨海默氏症的文化敏感性和以患者为中心的反馈的发展 痴呆风险披露 随着神经影像学和生物标志物测量的改进，阿尔茨海默病（AD）的早期检测 已经成为可能。类似地，这些方法具有阿尔茨海默型痴呆（DAT）的风险， AD的晚期表型表现。因此，患者有兴趣了解其个人风险 对于DAT的需求呈指数级增长，高达90%的人口要求DAT反馈。虽然研究 已经提出了关于提供个人风险因素反馈的一般建议，但没有研究 系统地比较了患者和家庭成员对风险披露的数量和类型的偏好 收到的信息（标准临床信息、基因型、神经影像学、生物标志物）。没有 了解不同患者人群对DAT风险披露的期望，我们不能有效地 通过最新的科学进展来交流信息，产生了一个翻译问题。 此外，现有DAT风险披露文献的一个关键疏忽是不注意患者特异性 决定偏好和适应DAT风险反馈的能力的因素。特别是心理和 非裔美国患者和家庭所经历的社会文化差异是决定 反馈偏好和效用，但以前没有在风险披露文献中进行评估。 缺乏文化上知情的反馈协议代表了所有广告面临的道德和实际挑战 研究人员，并有机会直接解决弱势群体医疗保健差距的潜在来源， 人口 拟议的项目将通过发展半结构化的反馈， DAT风险披露协议，根据患者的具体特征、偏好和 理性在第一年，我们将利用密歇根阿尔茨海默病核心中心的纵向队列， 对认知完整的种族多样性样本的需求和愿望进行系统的评估， MCI诊断患者及其护理人员（具体目标1）。具体来说，我们将调查所需的水平 风险信息（无，基于临床可用信息、遗传信息、定量 神经成像，和/或淀粉样蛋白和tau生物标志物负担），以及请求此的个人动机 信息，在非裔美国人和白色老年人的样本。需求评估还将分析 在这些样本中影响风险披露偏好的患者特异性因素，通过透镜， 健康信念模型在第二年，我们将制定和试点以患者为中心的反馈协议， 第1年的结果，包括患者和知情人满意度的即时和随访测量， 理解和心理反应（具体目标2）。这些协议将代表一个基本的 第一步是对文化敏感，灵活的DAT风险披露，适用于所有人口群体。

Project Summary: Development of Culturally-Sensitive and Patient-Centered Feedback for Alzheimer's Dementia Risk Disclosure With improvement in neuroimaging and biomarker measurement, earlier detection of Alzheimer's disease (AD) has been made possible. Similarly, these methods have informed risk for Dementia – Alzheimer's Type (DAT), the advanced phenotypic presentation of AD. Accordingly, patient interest in understanding their personal risk for DAT has grown exponentially, with up to 90% of the population requesting DAT feedback. While studies have produced general suggestions for providing feedback about individual risk factors, no study has systematically compared patient and family member preferences for the amount and type of risk disclosure information received (standard clinical information, genotype, neuroimaging, biomarkers). Without understanding the expectations of diverse patient populations for DAT risk disclosure, we cannot effectively communicate the information gained through recent scientific advances, creating a translational problem. Furthermore, a critical oversight of existing DAT risk disclosure literature is an inattention to the patient-specific factors that dictate preferences for and ability to adapt to DAT risk feedback. In particular, psychological and sociocultural differences experienced by African-American patients and families are critical factors dictating feedback preferences and utility, but have not previously been evaluated in risk disclosure literature. The lack of culturally-informed feedback protocols represents an ethical and practical challenge facing all AD researchers, and an opportunity to directly address a potential source of healthcare disparities in a vulnerable population. The proposed project will respond to these identified empirical gaps by developing semi-structured feedback protocols for DAT risk disclosure that are informed by patient-specific characteristics, preferences and rationale. In Year 1, we will utilize the Michigan Alzheimer's Disease Core Center's longitudinal cohort to conduct a systematic assessment of the needs and desires of a racially diverse sample of cognitively intact or MCI-diagnosed patients and their caregivers (Specific Aim 1). Specifically, we will investigate the desired level of risk information (none, based on readily clinically available information, genetic information, quantitative neuroimaging, and/or amyloid and tau biomarker burden), as well as personal motivations for requesting this information, in a sample of African-American and White older adults. The needs assessment will also analyze patient-specific factors that influence risk disclosure preferences in these samples, through the lens of the Health Belief Model. In Year 2 we will develop and pilot patient-centered feedback protocols informed by the results of Year 1, with immediate and follow-up measurement of patient and informant satisfaction, comprehension, and psychological reactions (Specific Aim 2). These protocols will represent a foundational first step towards culturally-sensitive, flexible DAT risk disclosure, appropriate across demographic groups.