Dementia and Value of Home Time

对于阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)(以下称为PWD)患者，缺乏生活质量(QOL)测量。如果没有它们，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。这种措施必须承认个人的偏好和福祉，以及动态变化，如他们在哪里居住和接受日常护理。留在家中仍然是残障人士的主要偏好。因此，如果更多的家庭时间反映了更高的生活质量，那么家庭时间结果指标就坚定地以人为中心，并可以使用无处不在的索赔数据来评估人口健康。然而，对于在家庭时间测量中包括哪些医疗保健环境，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利益相关者--残疾人及其帮助他们的家人和朋友(照顾者)的视角。我们也不知道哪些家庭时间的定义与以人为中心的结果(PCOS)关系最密切，这对残障人士来说是重要的。首要目标是得出最能反映残疾人生活质量的家庭时间指标，并确定可通过增加家庭时间来提高生活质量的可干预风险因素。重要的是，不同的偏好可能会配得上最能反映他们的生活质量的照顾者版本。在目标1中，我们将聘请一个利益相关者小组，然后进行深入访谈，以确定残疾人士及其照顾者的生活质量如何随残疾人士在不同医疗环境(例如急诊科、门诊手术、住院患者、疗养院和辅助生活)花费的时间而变化。在目标2中，我们将使用混合方法来开发一种针对PWD的单一家庭时间测量方法，该方法最能反映已知的与PWD有关的多囊卵巢综合征(以及针对照顾者的单独测量)。我们将把调查数据与联邦医疗保险和医疗补助声明联系起来，以允许对候选人设置进行比以往任何时候都更彻底的检查。我们将整合Aim 1的数据和来自定量分析的验证结果，以最终确定用于残障人士和照顾者的家庭时间衡量标准。在目标3中，我们将探讨导致残疾人士及其照顾者生活质量低的可干预风险因素与新开发的家庭时间衡量标准之间的关系。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作用来共同影响家庭时间，因此我们将使用机器学习来识别有影响的风险因素。推进家庭时间测量的科学是迫切的，不仅对于患有阿尔茨海默病和阿尔茨海默病相关痴呆(AD/ADRD)的人和照顾者来说，而且对于卫生系统来说也是如此，因为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衡量标准。政策召集会议将帮助我们传播使用家庭时间衡量标准(S)的最佳做法，并最大限度地减少任何全国性传播的绩效衡量标准的非预期负面后果。此外，确定可以解决的可干预风险因素，以增加残疾患者的回家时间，将为未来的干预和实践改变提供信息。

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.