Days spent at home: a patient-centered outcome measure for persons with Alzheimer's disease and related dementias

项目摘要/摘要(29/30行) 这项拟议的研究将研究一种新兴的以患者为中心的结果衡量标准--“天数”的新应用 对阿尔茨海默病和相关痴呆症患者(ADRD)来说，这是一个 目前缺乏有意义的、易于获取的结果衡量标准。 2020年，超过580万美国人患有ADRD，预计到2020年，这一数字将增长到1380万 2050年。鉴于目前没有治愈ADRD的方法，有效的治疗也是有限的，主要目标是 照顾ADRD患者的重点是生活质量、行为症状的控制和身体状况 独立。然而，对这些以患者为中心的结果的衡量-对 患者-是具有挑战性的，因为这些信息只能通过问卷或采访获得， 而这些在临床实践中并不是常规收集的。现有的研究往往集中在认知、健康 作为结果的护理利用率、成本和死亡率。缺乏有意义的结果衡量标准阻碍了 有效的组织和国家业绩改进努力和相关研究。 “在家度过的天数”被定义为活着和离开医疗机构的天数或比例。 在给定的时间段内，并且可以使用提供直观的 慢性疾病的医学、行为和心理后果。研究发现，患者和 他们的照顾者重视“在家里度过的日子”，并提供证据支持这名患者的有效性-- 以结果衡量为中心。然而，这一措施在ADRD患者中的应用一直受到限制。 而特定的患者因素对ADRD患者“在家度过的天数”的影响尚未得到 很好的特点。 使用来自健康退休研究的创新数据集、Medicare索赔数据和最低数据集 这包括广泛的临床和社会信息，我们的目标是(1)确定ADRD在“天”的负担 在家中度过“，比较”在家中度过的天数“和不在家中度过的天数的细目(按地点 关怀)跨按ADRD状态和严重程度分层的组，以及(2)确定可修改和不可修改的风险 通过测试相关性发现ADRD患者“在家呆的天数”减少的相关因素 在病人因素和“在家中度过的日子”之间。 这项拟议的研究将为未来在组织和组织中使用“在家度过的日子”奠定基础 国家绩效改进努力和研究，通过论证可行性来改善ADRD护理 这一结果衡量标准的应用情况，并在有以下情况的人中提供这一结果的参考数据 阿德勒。此外，一组新发现的可修改和不可修改的风险因素与较少的 “在家度过的日子”将成为未来有针对性的干预措施的依据。

Project Summary/Abstract (29/30 lines) The proposed research will study a new application of an emerging patient-centered outcome measure, “days spent at home,” to persons with Alzheimer’s disease and related dementias (ADRD), a population for which there is a shortage of meaningful, easily-captured outcome measures. In 2020, over 5.8 million Americans have ADRD, and the numbers are projected to grow to 13.8 million in 2050. Given that there are currently no cures for ADRD, and effective treatments are limited, the primary goals in caring for persons with ADRD are quality of life, control of behavioral symptoms, and physical independence. However, the measurement of these patient-centered outcomes—what matters most for patients—is challenging because the information can only be obtained through questionnaires or interviews, and these are not routinely collected in clinical practice. Existing research often focuses on cognition, health care utilization, costs, and mortality as outcomes. The lack of meaningful outcome measures has hindered effective organizational and national performance improvement efforts and relevant research. “Days spent at home” is defined as the number or proportion of days alive and spent out of health care facilities in a given period of time, and can be readily calculated using billing data providing an intuitive summary of the medical, behavioral, and psychological consequences of chronic conditions. Research has found patients and their caregivers value “days spent at home” and provided evidence to support the validity of this patient- centered outcome measure. However, the application of this measure to persons with ADRD has been limited and the impact of specific patient factors on “days spent at home” among persons with ADRD has not been well characterized. Using an innovative dataset from the Health Retirement Study, Medicare claims data, and Minimum Data Set that consists of extensive clinical and social information, we aim to (1) determine the burden of ADRD on “days spent at home” by comparing "days spent at home" and the breakdown of days not spent at home (by site of care) across groups stratified by ADRD status and severity, and (2) identify modifiable and unmodifiable risk factors associated with fewer “days spent at home” among persons with ADRD by testing the associations between patient factors and “days spent at home.” This proposed study will build the foundation for future use of “days spent at home” in organizational and national performance improvement efforts and research to improve ADRD care by demonstrating the feasibility of the application of this outcome measure and providing reference data for this outcome among persons with ADRD. Additionally, a set of newly-identified modifiable and unmodifiable risk factors associated with fewer “days spent at home” will inform future targeted interventions.