Double Danger: Additive Effects of Dementia and Additional Serious Illness on Patient, Caregiver, and Health System Outcomes

双重危险：痴呆症和其他严重疾病对患者、护理人员和卫生系统结果的叠加影响

• 批准号: 10689046
• 负责人: AMY STEVES KELLEY
• 金额: $ 15.08万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-30 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10689046
• 关键词: Address; Admission activity; Advanced Malignant Neoplasm; African American population; Aging; Caregivers; Caring; Cessation of life; Characteristics; Chronic; Cohort Studies; Communication; Consumption; Data; Dementia; Disparity; Elderly; Ensure; Face; Family; Goals; Guidelines; Health; Health Care Costs; Health Policy; Health and Retirement Study; Health system; Healthcare; Heart failure; Home; Hospital Mortality; Hospitalization; Hospitals; Hour; Individual; Intervention; Interview; Knowledge; Latino Population; Length of Stay; Life; Longitudinal Surveys; Medical; Medicare; Medicare claim; Methods; Nursing Homes; Outcome; Pain; Palliative Care; Patients; Persons; Population; Population Heterogeneity; Prevalence; Probability; Public Health; Quality of Care; Quality of life; Research; Risk; Sampling; Social Policies; Societies; Subgroup; Symptoms; System; Time; Uncertainty; Underserved Population; Unmarried; Vulnerable Populations; Work; care costs; caregiver strain; caregiving; cost; daily functioning; experience; functional disability; high risk; high school; improved; meetings; mortality risk; novel; patient oriented; population based; preference; prognostic; programs; prospective; racial disparity; social vulnerability; socioeconomic disparity; trend

RP1 Project Summary: Background: Healthcare spending is highly concentrated among a small seriously ill population and, despite high spending, quality of care for this group is often low, marked by poor communication, high burden of pain and other symptoms, and preference-discordant treatments. A key subset of this seriously ill population, persons with dementia (PWD), may experience the greatest burden of serious illness due to dementia’s long course of illness, progressive functional impairment, and high degree of caregiver strain, the impact of which is often magnified among vulnerable and underserved subgroups. These issues are not well characterized over the course of illness and very little is known about the experience of those with both dementia and another coexistent serious illness, such as advanced cancer or heart failure. Aims: This project aims to contribute rich, prospective patient-centered evidence examining the longitudinal experience of PWD and another coexistent serious illness and their families with additional focus on disparities in outcomes among socially vulnerable and underserved populations. We will: 1) examine among PWD the prevalence of another coexistent serious illness over time until death; 2) evaluate differences in treatment intensity (i.e., total Medicare costs, total hospital days, days away from home) annually and cumulatively until death, among person with dementia alone and those with dementia and another serious illness; and 3) assess differences in patient and family experience of care (i.e., caregiving hours, caregiver strain, care-setting transitions, nursing home admission and in-hospital death), among persons with dementia alone and those with dementia and another serious illness. In each aim, we will study differences across vulnerable subgroups. Methods: We will assemble a novel, prospectively-framed sample of PWD combining the nationally- representative Health and Retirement Study (HRS) and National Health and Aging Trends Study (NHATS) cohorts and follow them through the full course of dementia until death. Using currently available data, we will capture over 7000 individuals at the interview when probable dementia was first identified, and combine their longitudinal survey data with Medicare claims data through time of death, to investigate differences in treatment intensity and experience of care between those with dementia alone and those with dementia and another serious illness (e.g., advanced heart failure). Public Health Significance: Older adults with dementia and another coexistent serious illnesses and their families are at risk for suffering due to low-quality, high-cost care, yet little prospective data on their experiences exist. This project will examine the longitudinal experience of PWD and their families beginning when dementia was first identified, and compare these experiences to those with another serious illness, such as advanced cancer or heart failure. By examining patient and families’ experiences prospectively and over the full course of illness, we can begin to appropriately target the interventions needed to improve care.

RP1项目摘要： 背景：医疗保健支出高度集中在一个严重的人口中，需求 高支出，该组的护理质量通常很低，标志着沟通不良，痛苦燃烧高 以及其他症状以及偏好诊断的治疗方法。重病人群的关键子集， 患有痴呆症患者（PWD），由于痴呆症的长期，可能会遭受最大的严重疾病烧伤 疾病的过程，进行性功能障碍和高度护理人员应变，其影响是 在脆弱和服务不足的亚组中通常会放大。这些问题没有很好地表征 疾病的过程和对患有痴呆症和另一种痴呆症患者的经历知之甚少 并存严重疾病，例如晚期癌症或心力衰竭。 目的：该项目旨在为纵向贡献丰富的，预期的以患者为中心的证据 PWD和另一种共存的严重疾病的经验及其家人，额外关注差异 在社会脆弱和服务不足的人群中的结果。我们将：1）在PWD之间检查 随着时间的流逝，另一个共存的严重疾病的率直至死亡； 2）评估治疗差异 强度（即，医疗保险总成本，总医院的总天数，离家的天数），直到 死亡，仅患有痴呆症患者，患有痴呆症患者和另一种严重疾病； 3）评估 患者和家庭护理经验的差异（即护理时间，护理人员压力，护理设备 在痴呆症患者中，过渡，护士住院和院内死亡） 患有痴呆症和另一种严重疾病。在每个目标中，我们都将研究脆弱亚组之间的差异。 方法：我们将组装一个新颖的，前瞻性的PWD样本，结合了全国 代表性健康与退休研究（HRS）以及国家健康与衰老趋势研究（NHATS） 队列并跟随他们进行整个痴呆症的过程，直到死亡。使用当前可用的数据，我们将 首次识别出可能的痴呆症时，在面试中捕获超过7000个人 通过Medicare索赔数据的纵向调查数据，以调查 仅痴呆症患者与痴呆症患者之间的治疗强度和护理经验 另一个严重的疾病（例如，晚期心力衰竭）。 公共卫生意义：老年人患有痴呆症和另一种共存的严重疾病及其 由于低质量，高成本护理而导致的痛苦风险 存在经验。该项目将研究PWD及其家人开始的纵向经历 当痴呆症首次鉴定出来并将这些经历与患有另一种严重疾病的人进行比较时， 作为晚期癌症或心力衰竭。通过前瞻性地检查患者和家人的经历 完整的疾病，我们可以开始适当地针对改善护理所需的干预措施。