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

在家度过的天数：针对阿尔茨海默病和相关痴呆症患者的以患者为中心的结果测量

• 批准号: 10301309
• 负责人: Hiroshi Gotanda
• 金额: $ 16.7万
• 依托单位: CEDARS-SINAI MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-15 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10301309
• 关键词: Advance Care Planning; Alzheimer' s disease related dementia; American; Behavior; Behavior Control; Behavioral; Behavioral Symptoms; Caregivers; Caring; Chronic; Clinical; Clinical assessments; Cognition; Data; Data Analyses; Data Set; Elderly; Family; Female; Foundations; Future; Goals; Health and Retirement Study; Health care facility; Heart Diseases; Home; Intervention; Interview; Intuition; Link; Long-Term Care; Measurement; Measures; Medical; Medicare; Medicare claim; Mentors; Mentorship; Methods; Nursing Homes; Operative Surgical Procedures; Outcome; Outcome Measure; Outcomes Research; Participant; Patient-Focused Outcomes; Patients; Performance; Persons; Population; Proxy; Quality of Care; Quality of life; Questionnaires; Research; Research Personnel; Risk Factors; Severities; Site; Social Characteristics; Social support; Stroke; Testing; Time; Training; billing data; career; career development; clinical practice; comorbidity; cost; dementia care; effective therapy; end of life care; experience; health care service utilization; health management; improved; innovation; interest; modifiable risk; mortality; older patient; population health; psychologic; sex; skills; social

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.

项目摘要/摘要（29/30行） 拟议的研究将研究一个新的应用程序的一个新兴的病人为中心的结果衡量，“天 在家里度过，”对阿尔茨海默病和相关痴呆症（ADRD）患者， 缺乏有意义的、易于掌握的成果衡量标准。 到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.鉴于目前ADRD没有治愈方法，有效的治疗方法有限， 在照顾ADRD的人是生活质量，行为症状的控制，和身体 独立然而，对这些以患者为中心的结果的测量-- 病人-是具有挑战性的，因为信息只能通过问卷调查或访谈获得， 并且这些在临床实践中不是常规收集的。现有的研究往往集中在认知，健康， 护理利用率、成本和死亡率作为结果。缺乏有意义的成果衡量标准阻碍了 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”定义为存活和在医疗机构外度过的天数或比例 在给定的时间段内，并且可以使用计费数据来容易地计算，从而提供对 慢性病的医疗、行为和心理后果。研究发现， 他们的照顾者重视“在家度过的日子”，并提供证据支持该患者的有效性- 以结果为中心的测量。然而，这一措施对ADRD患者的适用有限， 具体的患者因素对ADRD患者“在家度过的天数”的影响尚未得到证实。 很好的描述。 使用来自健康退休研究、医疗保险索赔数据和最小数据集的创新数据集 包括广泛的临床和社会信息，我们的目标是（1）确定ADRD的负担“天 在家中度过的日数”与非在家度过的日数的分项数字比较（按 按ADRD状态和严重程度分层的各组之间的治疗），以及（2）识别可改变和不可改变的风险 与ADRD患者“在家呆的天数”较少相关的因素 病人因素和“在家的日子”之间的关系 这项拟议的研究将为今后在组织和 通过证明可行性，改善ADRD护理的国家绩效改进工作和研究 应用这一结果的措施，并提供参考数据，这一结果的人， ADRD。此外，一组新发现的可改变和不可改变的风险因素与较少的 “在家度过的天数”将为今后有针对性的干预提供信息。