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项目摘要： 背景：医疗保健支出高度集中在一小部分重病人口中，尽管 高支出，对这一群体的护理质量往往较低，特点是沟通不畅，痛苦负担高 和其他症状，以及偏爱不协调的治疗。这是重病人口中的一个关键子集， 痴呆症患者(PWD)，由于痴呆症的长期存在，可能会经历最大的严重疾病负担 病程、进行性功能障碍和高度照顾者压力，其影响是 通常在弱势和服务不足的亚群中被放大。这些问题没有得到很好的描述 病程，对痴呆症和其他痴呆症患者的经历知之甚少 同时患有严重疾病，如晚期癌症或心力衰竭。 目的：本项目旨在提供丰富的、以患者为中心的纵向检查证据。 残障和另一种共存的严重疾病及其家人的经历，并特别关注差异 在社会弱势和未得到充分服务的人群中取得的成果。我们会：1)研究残疾人士中 另一种共存的严重疾病的患病率随时间推移直至死亡；2)评估治疗的差异 强度(即医疗保险总费用、住院总天数、离家天数)每年累积直至 在单独患有痴呆症的人和患有痴呆症和其他严重疾病的人中死亡；以及3)评估 患者和家庭护理体验的差异(即护理时间、照顾者压力、护理环境 过渡期、疗养院入院和住院死亡)，在单独痴呆症患者和 患有痴呆症和另一种严重疾病。在每个目标中，我们都将研究弱势群体之间的差异。 方法：我们将收集一个新的，前瞻性框架的PWD样本，结合全国- 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) 并在痴呆症的整个病程中跟随他们，直到死亡。利用目前可用的数据，我们将 在采访中捕获7000多名首次发现可能患有痴呆症的人，并结合他们的 纵向调查数据与医疗保险索赔数据通过死亡时间，以调查差异 痴呆症患者与痴呆患者的治疗强度和护理体会 另一种严重疾病(例如，晚期心力衰竭)。 公共卫生意义：老年痴呆症与另一种严重并存疾病及其关系 由于低质量、高成本的护理，家庭面临痛苦的风险，但几乎没有关于他们的预期数据 经验是存在的。本项目将考察残障人士及其家属的纵向经历 当第一次发现痴呆症时，并将这些经历与那些患有其他严重疾病的人进行比较，例如 作为晚期癌症或心力衰竭。通过前瞻性地检查患者和家属的经历 在整个病程中，我们可以开始适当地针对改善护理所需的干预措施。