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

项目总结：开发对文化敏感和以患者为中心的阿尔茨海默氏症反馈 痴呆症风险披露 随着神经成像和生物标记物测量的改进，阿尔茨海默病(AD)的早期检测 已经成为可能。同样，这些方法已经告知了痴呆症的风险-阿尔茨海默氏症(DAT)， AD的高级表型表现。因此，患者有兴趣了解自己的个人风险 因为DAT呈指数级增长，高达90%的人口要求DAT反馈。一边学习一边学习 已经提出了关于提供个人风险因素反馈的一般性建议，但还没有研究 系统地比较患者和家属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、神经成像、生物标志物)。如果没有 了解不同患者群体对DAT风险披露的期望，我们无法有效地 交流通过最新的科学进步获得的信息，造成翻译问题。 此外，对现有DAT风险披露文献的严重疏忽是对特定于患者的疏忽 决定对DAT风险反馈的偏好和适应能力的因素。尤其是心理和心理上的 非裔美国人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。 缺乏文化信息反馈协议是所有AD面临的道德和实践挑战 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。 拟议的项目将通过开发半结构化反馈来回应这些已确定的经验差距 DAT风险披露协议，由患者特定的特征、首选项和 基本原理。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 对认知完好或不同种族的不同种族样本的需要和愿望进行系统评估 诊断为MCI的患者及其照顾者(具体目标1)。具体来说，我们将调查所需的级别 风险信息(无，基于现成的临床信息、遗传信息、数量 神经成像，和/或淀粉样蛋白和tau生物标记物负担)，以及要求这样做的个人动机 信息，在非裔美国人和白人老年人的样本中。需求评估还将分析 这些样本中影响风险披露偏好的特定于患者的因素，通过 健康信念模式。在第二年，我们将开发和试点以患者为中心的反馈协议，由 第一年的结果，包括对患者和告密者满意度的即时和后续测量， 理解和心理反应(特定目标2)。这些协议将代表一个基础 迈向对文化敏感、灵活的DAT风险披露的第一步，适当地跨人口统计群体。

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.