Midcareer Investigator Award for Patient-Oriented Research in Dementia and Serious Illness

项目摘要/摘要 背景：医疗支出高度集中在一小部分重病人口中。然而，大多数 高费用患者不是生命的最后一年，尽管支出很高，但这一群体的护理质量是 通常情绪低落，表现为沟通不畅，疼痛和其他症状负担重，以及偏好- 不和谐的处理方式。这一重病人群的一个关键亚群是阿尔茨海默病患者和 由于痴呆症病程较长，相关痴呆症患者可能会经历最大的重病负担 疾病、进行性功能障碍和高度的照顾者压力，其影响通常是 在弱势和服务不足的亚群中放大。这些问题没有得到很好的描述 病程，对痴呆症和另一种严重痴呆症患者的经历知之甚少 疾病，如癌症或心力衰竭。只有通过前瞻性地检查患者和家属的经历和 随着时间的推移，我们能否开始了解这些模式与患者护理质量和家庭的关系 结果，并因此适当针对改善护理所需的干预措施。 目标：在获奖期间，我的目标是通过以下方式扩大我的研究和指导计划1)建立 创新的前瞻性框架样本，在痴呆症发作时确定，用于检查患者和家人 结果(即医院和急诊科入院、繁重的过渡、疗养院 入学和家庭财富的耗尽)随时间推移；以及2)在该样本内检查 这些患者和家庭的结果在痴呆症患者和同样患有痴呆症的患者之间进行比较 严重疾病(如癌症)。在这两个目标中，我们还将检查弱势群体之间的差异。 方法：在两个具有全国代表性的纵向队列中并行工作，健康和 退休研究和国家健康和老龄化趋势研究，与个人层面的医疗保险索赔有关， 我们将识别偶发痴呆症和其他严重疾病。通过锚定到第一个观察到的患病日期， 我们将构建一个纵向的个人级别的数据集，包括丰富的患者和家庭报告的指标，如 以及医疗保健索赔。然后，我们将使用这些数据来检查老年人的经历和结果 患有痴呆症的成年人，无论是否患有其他严重疾病，随着时间的推移，也调查 弱势社会和人口亚群。 公共卫生意义：患有痴呆症和其他严重疾病的老年人及其家人在 由于低质量、高成本的护理而带来的痛苦风险，但关于他们的经历的预期数据很少。这 该项目将检查痴呆症患者及其家人的纵向经历，从 并将这些经历与患有其他严重疾病的人进行比较，如癌症或 心力衰竭。这项研究还将作为指导初级调查人员的平台。

Project Summary / Abstract Background: Healthcare spending is highly concentrated among a small seriously ill population. Yet, most high-cost patients are not in the last year of life 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 Alzheimer's disease and related dementias, 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 serious illness, such as cancer or heart failure. Only by examining patient and families' experiences prospectively and over time can we begin to understand how these patterns are associated with patient care quality and family outcomes and thus appropriately target the interventions needed to improve care. Aims: Over the award period, I aim to expand my research and mentoring program by 1) building an innovative prospectively-framed sample, identified at onset of dementia, to examine patient and family outcomes (i.e., hospital and emergency department admissions, burdensome transitions, nursing home admission, and exhaustion of household wealth) over time; and 2) examining within this sample, differences in these patient and family outcomes between those with dementia compared to those who also have another serious illness (e.g., cancer). In both aims, we will also examine differences across vulnerable subgroups. Methods: Working in parallel across two nationally-representative, longitudinal cohorts, the Health and Retirement Study and the National Health and Aging Trends Study, linked to individual-level Medicare claims, we will identify incident dementia and other serious illnesses. By anchoring to the first observed date of illness, we will construct a longitudinal person-level dataset, including rich patient and family reported measures as well as healthcare claims. We will then use these data to examine the experiences and outcomes of older adults with dementia, with or without another serious illness, over time and also investigate disparities across vulnerable social and demographic subgroups. Public Health Significance: Older adults with dementia and other 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 those with dementia and their families beginning with the onset of dementia, and compare these experiences to those with another serious illness, such as cancer or heart failure. This study will also serve as a platform for mentoring junior investigators.