Racial Disparities in Distressing Symptoms for Nursing Home Residents at EOL with Alzheimer’s Disease and Related Dementias

患有阿尔茨海默病和相关痴呆症的疗养院居民在痛苦症状方面存在种族差异

• 批准号: 10549298
• 负责人: Cassandra Marie Dictus
• 金额: $ 3.89万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-01-07 至 2024-01-06
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10549298
• 关键词: Address; Affect; Age; Agitation; Alzheimer' s disease related dementia; Area; Big Data; Black race; COVID-19 pandemic; Caring; Cause of Death; Client; Clinical; Cognitive; Color; Complex; Confounding Factors (Epidemiology); Data; Data Set; Databases; Dementia; Discipline of Nursing; Disease; Disparity; Distress; Eating; Edema; Equity; Family; Fellowship; Foundations; Friends; Future; Goals; Home Nursing Care; Impaired cognition; Impairment; Incontinence; Individual; Inequity; Institutional Racism; Intervention; Interview; Link; Measures; Medicaid; Methods; National Institute of Nursing Research; Nurses; Nursing Homes; Outcome; Ownership; Pain; Pain management; Persons; Play; Population; Prevalence; Quality of Care; Race; Racial Equity; Racial Segregation; Research; Respiratory distress; Risk; Risk Adjustment; Role; Scientist; Site; Specific qualifier value; Standardization; Structure; Symptoms; Training; Work; aspirate; career; comorbidity; decubitus ulcer; end of life; end of life care; experience; falls; health assessment; health care disparity; health difference; health equity; health inequalities; improved; lens; palliative; people of color; pre-doctoral; preference; psychological distress; racial disparity; racial diversity; racism; research study; sex; social health determinants; stakeholder perspectives; symptom management

PROJECT SUMMARY/ABSTRACT Alzheimer's disease and related dementias (ADRD) are increasing in prevalence and are among the most common causes of death and costliest diseases in the U.S. Approximately 60% of people with ADRD in the U.S. die in nursing homes (NHs). To maximize the quality of end of life (EOL), a palliative approach is needed that minimizes preventable or treatable distressing symptoms (e.g., pain, respiratory distress) and associated conditions (e.g., falls, pressure ulcers, aspiration) that cause physical and psychological distress. Factors, such as resident ADRD status (i.e., no, mild, moderate, or severe cognitive impairment), resident race, and NH-level racial segregation are associated with EOL care practices, but little is known about how these factors relate specifically to distressing EOL symptoms. Research is needed examining how racial disparities may intersect with residents' ADRD status to increase the risk of experiencing distressing symptoms. Current research lacks the perspectives of stakeholders, especially NH residents, family, and staff from racially segregated NHs who can speak to multi-level factors related to distressing symptoms. The proposed pre-doctoral training fellowship will include a mixed-methods study to examine differences related to ADRD status, race, and racial segregation and explore NH stakeholder views of distressing EOL symptoms. Aim 1 is to explore differences in distressing symptoms at EOL related to resident ADRD status, resident race, and NH racial segregation. Aim 1 will use U.S. MDS 3.0 data to examine the relationships of 19 distressing symptoms (e.g., pain, respiratory distress, falls) with resident ADRD status, race, and level of NH racial segregation, including confounding variables (e.g., resident age, sex, comorbidity burden and NH size, ownership, percent of residents using Medicaid). The primary hypothesis is that residents of color will experience worse symptom outcomes overall, but these differences will largely be explained by NH racial segregation. The secondary hypotheses are that there will be interaction effects for resident race*resident ADRD status and resident race*NH racial segregation. Aim 2 is to engage NH stakeholders to understand racial disparities in distressing symptoms for NH residents with ADRD at EOL. Through semi-structured interviews with stakeholders (e.g., residents, family, friends, care staff, managers) from racially segregated NHs, Aim 2 will explore stakeholder views of how distressing symptoms impact residents at EOL and factors associated with differences in distressing symptoms related to ADRD status, race, and racial segregation. Outcomes will inform future research by specifying stakeholders' perspectives about which symptoms are distressing for residents living in racially segregated NHs and potential causal factors of disparities at multiple levels. This fellowship will provide the trainee with a foundation in health equity, EOL care research, and use of the rich MDS dataset to launch a career as a nursing scientist. The findings will identify key areas for EOL care improvement and address barriers to health equity to reduce suffering among NH residents with ADRD at EOL.

项目摘要/摘要 阿尔茨海默氏病和相关痴呆症（ADRD）的患病率正在增加，并且是最大的 美国的常见死亡原因和最昂贵的疾病在美国大约有60％的ADRD患者 美国在疗养院（NHS）中死亡。为了最大程度地提高生命的终结质量（EOL），需要一种姑息治疗方法 最大程度地减少了可预防或可治疗的痛苦症状（例如，疼痛，呼吸窘迫）和 相关条件（例如，瀑布，压力溃疡，愿望），造成身体和心理困扰。 居民身份（即无，轻度，中度或严重认知障碍）等因素，居民 种族和NH级别的种族隔离与EOL护理实践有关，但对如何如何了解 这些因素特别与令人痛苦的EOL症状有关。需要研究检查种族 差异可能与居民的ADRD身份相交，以增加遇到困扰的风险 症状。当前的研究缺乏利益相关者，尤其是NH居民，家庭和员工的观点 从种族隔离的NHS，他们可以与与痛苦症状有关的多层次因素进行交谈。这 拟议的博士前培训奖学金将包括一项混合方法研究，以检查与 ADRD身份，种族和种族隔离，并探索NH利益相关者对令人痛苦的EOL症状的看法。 目的1是探索与居民ADRD身份有关的EOL的痛苦症状差异， 居民种族和NH种族隔离。 AIM 1将使用美国MDS 3.0数据来检查 19令人困扰的症状（例如，疼痛，呼吸窘迫，跌倒），居民身份，种族和水平 NH种族隔离，包括混杂变量（例如居民年龄，性别，合并症负担和NH 规模，所有权，使用医疗补助的居民百分比）。主要假设是颜色的居民将 总体上会经历更糟糕的症状结果，但是这些差异将在很大程度上通过NH种族来解释 隔离。次要假设是居民种族会有互动效应*居民 ADRD地位和居民种族*NH种族隔离。目标2是让NH利益相关者了解 EOL ADRD的NH居民令人痛苦的症状的种族差异。通过半结构化 种族隔离的利益相关者（例如居民，家人，朋友，护理人员，经理）的访谈 NHS，AIM 2将探讨利益相关者的观点，即令人困扰的症状如何影响EOL的居民和因素 与与ADRD状况，种族和种族隔离有关的痛苦症状差异有关。 结果将通过指定利益相关者对哪些症状的观点来为未来的研究提供信息 为生活在种族隔离的NHS和潜在的差异因素的居民感到痛苦 水平。该奖学金将为受训者提供健康公平，EOL护理研究的基础，并使用 富裕的MDS数据集开始担任护理科学家的职业。这些发现将确定EOL护理的关键领域 改善和解决卫生公平的障碍，以减少EOL ADRD居民的苦难。