Dementia and Value of Home Time

痴呆症和家庭时间的价值

• 批准号: 10208263
• 负责人: Courtney Harold Van Houtven
• 金额: $ 224.67万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-30 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10208263
• 关键词: Accident and Emergency department; Acute; Address; Alzheimer' s Disease; Alzheimer' s disease related dementia; Ambulatory Surgical Procedures; Assisted Living Facilities; Caregivers; Caring; Clinical; Clinical Research; Consensus; Data; Day Care; Decision Trees; Delirium; Dementia; Dementia caregivers; Discipline of Nursing; Effectiveness of Interventions; Emergency department visit; Family; Foundations; Friends; Future; Goals; Health; Health Policy; Health system; Home; Home Care Services; Hospitals; Individual; Inpatients; Intervention; Interview; Investments; Link; Machine Learning; Measures; Medicare/Medicaid; Mental Depression; Methods; Modeling; Nosocomial Infections; Nursing Homes; Outcome; Outcome Measure; Performance; Personal Satisfaction; Persons; Policies; Population; Quality of Care; Quality of life; Research; Retirement; Risk Factors; Science; Surveys; Time; Validation; Visit; Weight; base; design; effectiveness evaluation; experience; functional decline; health care settings; improved; informal caregiver; meetings; mild cognitive impairment; nursing home length of stay; payment; person centered; population health; preference; programs; random forest; social; temporal measurement

There is a paucity of quality of life (QoL) measures for persons living with Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) (hereafter called PWD). Without them, we cannot assess the effectiveness of interventions, policies, or health system investments that aim to improve QoL for PWD. Such measures must acknowledge a person’s preferences and well-being, as well as dynamic changes such as where they live and receive care day-to-day. Staying in one’s home remains the dominant preference among PWD. Therefore, if more home time reflects higher quality of life, ‘home time’ outcome measures are firmly person-centered and could assess population health using ubiquitous claims data. No consensus exists, however, on what health care settings to include in a home time measure. A key reason for our incomplete understanding is that we lack the perspectives of key stakeholders–PWD and their family and friends who help them (caregivers). Nor do we know which definitions of home time most closely relate to person-centered outcomes (PCOs) that matter to PWD. The overarching goal is to arrive at a home time measure that most closely reflects quality of life for PWD and to identify intervenable risk factors that could increase QoL by increasing home time. Importantly, distinct preferences will likely merit a caregiver-version that most closely reflects their QoL. In Aim 1, we will engage a stakeholder panel and then hold in-depth interviews to identify how quality of life for PWD and for their caregivers varies depending on the PWD’s time spent in different health care settings (e.g. emergency department, outpatient surgery, inpatient, nursing home, and assisted living). In Aim 2, we will use mixed methods to develop a single home time measure for PWD that is most closely reflective of PCOs known to matter to PWD (and a separate measure for caregivers). We will link survey data with Medicare and Medicaid claims to allow a more thorough examination of candidate settings than has ever occurred. We will integrate Aim 1 data and validation results from quantitative analyses in order to finalize a home time measure for PWD and one for caregivers. In Aim 3, we will explore how intervenable risk factors that contribute to low QoL for PWD and their caregivers relate to the newly developed home time measures. Because we do not yet understand the relative importance of home, clinical, and social risk factors or how they operate together to jointly influence home time, we will use machine learning to identify impactful risk factors. Advancing the science of home time measurement is urgent, not only for Persons living with Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) and caregivers, but also for health systems, given that CMS has launched demonstration programs proposing use of a home time measure as a performance metric for payment policy design. A Policy Convening meeting will help us disseminate best practices for use of the home time measure(s) and minimize negative unintended consequences of any nationally disseminated performance measure. In addition, identifying intervenable risk factors that could be addressed to increase home time for PWD will inform future interventions and practice changes.

对于患有阿尔茨海默病和阿尔茨海默病相关痴呆（AD/ADRD）（以下称为PWD）的人，缺乏生活质量（QoL）测量。如果没有他们，我们就无法评估旨在改善残疾人生活质量的干预措施、政策或卫生系统投资的有效性。这些措施必须承认一个人的偏好和福祉，以及动态变化，如他们的生活和日常护理地点。留在家中仍然是残疾人的主要偏好。因此，如果更多的在家时间反映了更高的生活质量，“在家时间”的结果措施是坚定的人为中心，可以评估人口健康使用无处不在的索赔数据。然而，在家庭时间措施中应包括哪些卫生保健环境方面，还没有达成共识。我们不完全理解的一个关键原因是，我们缺乏关键残疾人的观点-残疾人及其帮助他们的家人和朋友（照顾者）。我们也不知道哪些家庭时间的定义与以人为本的结果（PCO）最密切相关，这对PWD很重要。总体目标是达到一个家庭时间的措施，最密切地反映了生活质量的PWD和识别可干预的风险因素，可以增加生活质量的增加家庭时间。重要的是，不同的偏好可能值得一个最能反映他们生活质量的转换版本。在目标1中，我们将与利益相关者小组合作，然后进行深入访谈，以确定PWD及其护理人员的生活质量如何根据PWD在不同医疗保健环境（例如急诊室，门诊手术，住院，疗养院和辅助生活）中花费的时间而变化。在目标2中，我们将使用混合方法为PWD开发一个最能反映已知对PWD重要的PCO的单一在家时间指标（以及针对护理人员的单独指标）。我们将把调查数据与医疗保险和医疗补助索赔联系起来，以便对候选人的设置进行比以往任何时候都更彻底的检查。我们将整合目标1数据和定量分析的验证结果，以最终确定PWD和护理人员的家庭时间测量。在目标3中，我们将探讨导致PWD及其护理人员生活质量低下的可干预风险因素与新开发的在家时间测量方法之间的关系。由于我们还不了解家庭、临床和社会风险因素的相对重要性，也不知道它们如何共同影响家庭时间，因此我们将使用机器学习来识别有影响力的风险因素。推进家庭时间测量的科学是紧迫的，不仅对阿尔茨海默病和阿尔茨海默病相关痴呆症（AD/ADRD）和照顾者，而且对卫生系统，鉴于CMS已经启动了示范计划，建议使用家庭时间测量作为支付政策设计的绩效指标。政策召集会议将帮助我们传播使用在家时间衡量标准的最佳做法，并尽量减少任何全国传播的业绩衡量标准的负面意外后果。此外，确定可干预的风险因素，可以解决，以增加残疾人的家庭时间将告知未来的干预措施和实践的变化。