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

为阿尔茨海默氏症痴呆风险披露制定文化敏感且以患者为中心的反馈

• 批准号: 9902303
• 负责人: Annalise Rahman-Filipiak
• 金额: $ 15.6万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2022-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9902303
• 关键词: Address; Adoption; Affect; African American; Alzheimer disease detection; Alzheimer' s Disease; Alzheimer' s Disease Core Center; Alzheimer' s disease model; Amyloid; Attention; Behavior; Belief; Biological Markers; Caregivers; Characteristics; Clinical; Cognitive; Communication; Complex; Comprehension; Data; Development; Diagnosis; Disclosure; Disease; Disease Progression; Early Diagnosis; Effectiveness; Elderly; Ethics; Familiarity; Family; Family member; Feedback; Foundations; Funding; Future; Genetic Markers; Genotype; Goals; Guidelines; Health behavior; Impaired cognition; Individual; Infrastructure; Knowledge; Learning; Literature; Longitudinal cohort; Low Income Population; Measurement; Measures; Medical Genetics; Methods; Michigan; Minority; Modeling; Moods; Motivation; Needs Assessment; Nerve Degeneration; Neurologic; Neuropsychology; Participant; Patient Recruitments; Patients; Phenotype; Population; Positron-Emission Tomography; Protocols documentation; Reaction; Recording of previous events; Reporting; Research; Research Personnel; Resources; Risk; Risk Factors; Sampling; Scientific Advances and Accomplishments; Series; Shapes; Source; Specific qualifier value; Staging; Standardization; Structure; Suggestion; Testing; Training; Translational Research; Urban Population; Vulnerable Populations; base; caregiving; clinical practice; dementia risk; design; ethnic minority population; expectation; experience; flexibility; follow-up; genetic information; health belief; health care disparity; health disparity; high risk; improved; inattention; informant; interest; lens; mild cognitive impairment; modifiable risk; neuroimaging; neuroimaging marker; patient oriented; patient population; person centered; preference; psychoeducation; psychologic; racial difference; racial diversity; ranpirnase; recruit; satisfaction; social culture; tau Proteins; β-amyloid burden

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.

项目摘要：针对阿尔茨海默病开发文化敏感且以患者为中心的反馈 痴呆症风险披露 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 已成为可能。同样，这些方法也揭示了痴呆症 - 阿尔茨海默氏症 (DAT) 的风险， AD 的高级表型表现。因此，患者有兴趣了解他们的个人风险 DAT 的需求呈指数级增长，高达 90% 的人口要求 DAT 反馈。在学习的同时 已经提出了提供有关个人风险因素反馈的一般建议，但没有研究提出 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、基因型、神经影像、生物标志物）。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 传达通过最新科学进步获得的信息，从而产生转化问题。 此外，对现有 DAT 风险披露文献的严重监督是对患者特定情况的忽视 决定 DAT 风险反馈偏好和适应能力的因素。特别是心理和 非裔美国患者和家庭经历的社会文化差异是决定的关键因素 反馈偏好和效用，但之前尚未在风险披露文献中进行过评估。 缺乏文化背景的反馈协议是所有AD面临的道德和实际挑战 研究人员，以及直接解决弱势群体医疗保健差异的潜在根源的机会 人口。 拟议的项目将通过开发半结构化反馈来应对这些已确定的经验差距 DAT 风险披露协议根据患者的具体特征、偏好和 理由。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来 对认知完整或认知不同的不同种族样本的需求和愿望进行系统评估 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，基于现成的临床可用信息、遗传信息、定量信息） 神经影像学和/或淀粉样蛋白和 tau 生物标志物负担），以及提出此要求的个人动机 信息，来自非裔美国人和白人老年人的样本。需求评估还将分析 从患者的角度来看，影响这些样本中风险披露偏好的患者特定因素 健康信念模型。在第二年，我们将制定并试点以患者为中心的反馈协议，该协议由 第一年的结果，对患者和信息提供者的满意度进行即时和后续测量， 理解和心理反应（具体目标 2）。这些协议将代表一个基础 迈向文化敏感、灵活的 DAT 风险披露、适合不同人口群体的第一步。