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

项目概要/摘要 背景：医疗保健支出高度集中在少数重病人群中。然而，大多数 高成本的患者不是在生命的最后一年，尽管花费高，但这一群体的护理质量 通常较低，表现为沟通不畅，疼痛和其他症状的高负担，以及偏好- 不一致的治疗。这一严重疾病人群的一个关键子集，阿尔茨海默病患者和 相关的痴呆症，可能会经历最大的负担，严重的疾病，由于痴呆症的长期过程， 疾病，进行性功能障碍，以及高度的照顾者压力，其影响往往是 在脆弱和得不到充分服务的亚群体中扩大。这些问题没有很好地描述， 疾病的过程和很少有人知道那些既有痴呆症和另一个严重的经验， 疾病，如癌症或心力衰竭。只有前瞻性地检查病人和家属的经历， 随着时间的推移，我们可以开始了解这些模式是如何与病人护理质量和家庭相关联的 因此，我们需要采取适当的干预措施，以改善护理。 目标：在获奖期间，我的目标是通过1）建立一个 创新前瞻性框架样本，在痴呆症发作时确定，以检查患者和家庭 结果（即，医院和急诊室入院，繁重的过渡，疗养院 入学，和家庭财富耗尽）随着时间的推移;和2）检查在这个样本中， 这些患者和家庭的结果与痴呆症患者相比， 严重疾病（例如，癌症）。在这两个目标中，我们还将研究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，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， 我们会识别痴呆症和其他严重疾病。通过锚定到第一次观察到的患病日期， 我们将构建一个纵向的个人水平数据集，包括丰富的患者和家庭报告的措施， 以及医疗索赔。然后，我们将使用这些数据来检查老年人的经验和结果。 随着时间的推移，患有痴呆症的成年人，无论是否患有其他严重疾病， 弱势社会和人口亚群体。 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，他们有遭受痛苦的风险，但关于他们经历的前瞻性数据很少。这 该项目将研究痴呆症患者及其家庭的纵向经验， 痴呆症发作，并将这些经历与其他严重疾病（如癌症或 心衰这项研究还将作为指导初级研究人员的平台。

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.