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: 10265434
• 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/10265434
• 关键词: Address; Admission activity; Advanced Malignant Neoplasm; African American; Aging; Caregivers; Caring; Cessation of life; Characteristics; Chronic; Cohort Studies; Communication; Consumption; Data; Dementia; 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; Length of Stay; Life; Longitudinal Surveys; Medical; Medicare; Medicare claim; Methods; Nursing Homes; Outcome; Pain; Palliative Care; Patients; Persons; Population; Population Heterogeneity; Prevalence; 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项目概要： 背景：医疗保健支出高度集中在少数重病人群中，尽管 高支出，该群体的护理质量通常较低，其特点是沟通不畅，痛苦负担高 和其他症状，以及偏好不一致的治疗方法。这个重病人群的一个关键子集， 由于痴呆症长期存在，痴呆症患者 (PWD) 可能会经历严重疾病的最大负担 病程、进行性功能障碍和护理人员高度紧张，其影响是 往往在弱势和服务不足的亚群体中被放大。这些问题没有得到很好的描述 疾病的过程，而对于同时患有痴呆症和其他疾病的人的经历知之甚少 并存的严重疾病，例如晚期癌症或心力衰竭。 目标：该项目旨在提供丰富的、以患者为中心的前瞻性证据，检查纵向 残疾人和另一种共存的严重疾病及其家人的经历，特别关注差异 社会弱势群体和服务不足人群的结果。我们将： 1) 检查残疾人中的 随着时间的推移，另一种并存的严重疾病的患病率直至死亡； 2）评估治疗差异 每年和累计的强度（即医疗保险总费用、住院总天数、离家天数），直到 单纯痴呆症患者以及患有痴呆症和其他严重疾病的患者死亡； 3）评估 患者和家属护理体验的差异（即护理时间、护理人员压力、护理环境 单纯痴呆症患者和那些患有痴呆症的患者 患有痴呆症和另一种严重疾病。在每个目标中，我们将研究弱势群体之间的差异。 方法：我们将结合全国范围内的情况，构建一个新颖的、前瞻性的 PWD 样本。 代表性健康与退休研究 (HRS) 和国家健康与老龄化趋势研究 (NHATS) 并跟踪他们经历痴呆症直至死亡的整个过程。使用当前可用的数据，我们将 当首次发现可能患有痴呆症时，在采访中捕获了 7000 多人，并将他们的 纵向调查数据与整个死亡时间的医疗保险索赔数据，以调查 单纯痴呆症患者与痴呆症患者之间的治疗强度和护理经验 另一种严重疾病（例如晚期心力衰竭）。 公共卫生意义：患有痴呆症和其他共存严重疾病的老年人及其健康状况 由于低质量、高成本的护理，家庭面临遭受痛苦的风险，但关于他们的前瞻性数据却很少 经验是存在的。该项目将研究残疾人及其家人的纵向经验 当痴呆症首次被发现时，并将这些经历与其他严重疾病的经历进行比较，例如 如晚期癌症或心力衰竭。通过前瞻性地审查患者和家属的经历 在整个疾病过程中，我们可以开始适当地针对改善护理所需的干预措施。