Health Services Use and Outcomes in Older Adults with Dementia Living Undiagnosed or Unaware of Dementia

未确诊或不了解痴呆症的痴呆症老年人的卫生服务使用和结果

• 批准号: 9899185
• 负责人: Halima Amjad
• 金额: $ 16.38万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2023-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9899185
• 关键词: Accident and Emergency department; Address; Adverse event; Advisory Committees; Affect; Aging; Algorithms; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Awareness; Belief; Blood Vessels; Caring; Characteristics; Classification; Clinical; Cognitive; Communities; Coupled; Data; Dementia; Detection; Diagnosis; Disclosure; Disease; Early Diagnosis; Education; Elderly; Emergency department visit; Family; Family health status; Frontotemporal Dementia; Health; Health Services; Health system; Healthcare; Hispanics; Home environment; Hospitalization; Hospitals; Impaired cognition; Impairment; Individual; Intervention; Interview; Knowledge; Length of Stay; Lewy Bodies; Light; Link; Medical; Medicare claim; Medication Management; Minority; Outcome; Participant; Patient-Focused Outcomes; Patients; Persons; Population; Prevalence; Prevention; Preventive; Preventive service; Principal Investigator; Race; Research; Risk; Sampling; Self Management; Services; Social Behavior; Subgroup; Target Populations; Translating; United States; Visit; Vulnerable Populations; Work; adverse outcome; base; behavioral impairment; career; clinical Diagnosis; cohort; cost; dementia care; early awareness; epidemiology study; family support; functional decline; functional disability; health service use; hospital readmission; hospitalization rates; iatrogenic injury; improved outcome; novel strategies; prevent; therapy design; trend

PROJECT SUMMARY Astoundingly, about half of approximately 5.7 million persons living with Alzheimer’s disease and related dementias in the United States are undiagnosed. Persons with undiagnosed dementia are living with cognitive impairment that affects everyday activities but has not been detected by patients, families, and/or clinicians. Additionally, in one third of diagnosed patients, they or their families are unaware of a dementia diagnosis. Thus, diagnosis does not always translate to awareness and understanding of a significant condition. Though most individuals with dementia are undiagnosed or unaware, early diagnosis and disclosure is controversial in the absence of disease-modifying treatments. The United States Preventive Services Task Force has not yet found evidence of benefit for early dementia detection on patient outcomes. This proposal seeks to build evidence of whether early diagnosis and awareness, related but distinct concepts, could improve outcomes. A novel approach to identifying potential benefits of early dementia diagnosis is to identify negative outcomes occurring when persons are undiagnosed or unaware. Such outcomes could potentially be prevented through earlier, transparent diagnosis linked to proactive care. This project focuses on health services use, specifically emergency department (ED) visits, hospitalization, hospitalization outcomes, and spending as outcomes that may be affected by lack of dementia diagnosis or awareness. ED visits and hospitalization are common and associated with adverse outcomes in diagnosed dementia; it is not known whether ED and hospitalization rates and outcomes are similar in undiagnosed dementia. Persons with undiagnosed dementia may in fact have higher rates, worse outcomes, and greater spending in the absence of dementia detection, care, and support. To address this hypothesis, the proposal leverages the National Health and Aging Trends Study, a nationally representative cohort of older Americans that identifies participants with probable dementia through a validated interview and assessment-based algorithm. Linked Medicare claims data for 4,311 participants offers the opportunity to examine longitudinal health services outcomes in persons with probable dementia who are undiagnosed or unaware of the diagnosis. Dementia diagnoses will encompass Alzheimer’s disease and related disorders (e.g. vascular, mixed, Lewy body, and frontotemporal dementia). Aim 1 investigates whether dementia diagnosis or awareness is associated with risk of all-cause and potentially preventable ED visits and hospitalizations over four years, comparing undiagnosed versus diagnosed and unaware versus aware of diagnosis. Aim 2 compares annual healthcare spending, and among participants hospitalized, annual hospital length of stay, days at home, and 30-day readmissions by diagnosis and awareness status. Aim 3 identifies predictors of ED visits and hospitalizations among persons undiagnosed or unaware. These aims will contribute to limited knowledge of outcomes in undiagnosed dementia, potential benefits of earlier, transparent diagnosis, and subgroups who may particularly benefit from earlier diagnosis and proactive medical care.

项目摘要令人震惊的是，在美国大约570万阿尔茨海默病和相关痴呆症患者中，约有一半没有得到诊断。未诊断的痴呆症患者患有认知障碍，影响日常活动，但尚未被患者、家人和/或临床医生发现。此外，在三分之一的确诊患者中，他们或他们的家人不知道痴呆症的诊断。因此，诊断并不总是转化为对重大疾病的认识和理解。尽管大多数痴呆症患者没有得到诊断或意识不到，但在缺乏改善疾病的治疗方法的情况下，早期诊断和披露是有争议的。美国预防服务工作组尚未发现证据表明，早期发现痴呆症对患者预后有好处。这项提议寻求建立证据，证明早期诊断和意识--相关但不同的概念--是否可以改善结果。确定早期痴呆症诊断的潜在益处的一种新方法是确定当人们未被诊断或未意识到时发生的负面结果。通过与主动护理相关的更早、透明的诊断，这种结果可能会得到预防。该项目的重点是卫生服务的使用，特别是急诊科就诊、住院、住院结果和支出结果，这些结果可能会受到痴呆症诊断或意识不足的影响。急诊室就诊和住院是常见的，并与确诊的痴呆症的不良后果有关；尚不清楚在未确诊的痴呆症中，急诊率和住院率和结果是否相似。事实上，在缺乏痴呆症检测、护理和支持的情况下，未诊断的痴呆症患者可能会有更高的发病率、更差的结果和更大的支出。为了解决这一假设，该提案利用了国家健康和老龄化趋势研究，这是一个具有全国代表性的美国老年人队列，通过有效的访谈和基于评估的算法确定参与者可能患有痴呆症。4311名参与者的相关医疗保险索赔数据提供了机会，检查未诊断或不知道诊断的可能患有痴呆症的人的纵向卫生服务结果。痴呆症的诊断将包括阿尔茨海默氏症和相关疾病(例如，血管性、混合性、路易体和额颞痴呆)。目的1调查痴呆的诊断或意识是否与四年内全原因和潜在可预防的急诊室就诊和住院的风险有关，比较未诊断和诊断、不知道和知道诊断的风险。目标2根据诊断和意识状况比较年度医疗支出，以及在住院的参与者中，每年的住院时间、在家的天数和30天的再住院时间。目的3在未确诊或不知情的人群中确定急诊就诊和住院的预测因素。这些目标将有助于对未诊断痴呆症的结果、早期透明诊断的潜在好处以及可能特别受益于早期诊断和主动医疗的亚群的有限了解。