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

项目摘要/摘要 阿尔茨海默病和相关痴呆症(ADRD)的患病率正在上升，是 美国常见的死亡原因和最昂贵的疾病。在美国，大约60%的ADRD患者 美国人死于养老院(NHS)。为了最大限度地提高生命末期(EOL)的质量，需要一种姑息的方法 这最大限度地减少了可预防或可治疗的痛苦症状(如疼痛、呼吸窘迫)和 导致身体和心理痛苦的相关情况(如跌倒、压疮、吸入)。 因素，如居民ADRD状态(即无、轻度、中度或严重认知障碍)、居民 种族和NH级别的种族隔离与EOL护理做法有关，但人们对此知之甚少 这些因素与令人痛苦的EOL症状特别相关。需要进行研究，以检验种族 差异可能与居民的ADRD状况相交，从而增加经历痛苦的风险 症状。目前的研究缺乏利益相关者的视角，特别是NH居民、家庭和工作人员 从种族隔离的国民健康保险制度到与令人痛苦的症状相关的多层面因素。这个 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地位、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是探讨EOL中与居民ADRD状况有关的痛苦症状的差异， 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种令人痛苦的症状(例如，疼痛、呼吸窘迫、跌倒)，以及居民的ADRD状态、种族和 NH种族隔离，包括混淆变量(例如，居民年龄、性别、共病负担和NH 规模、所有权、使用医疗补助的居民百分比)。主要的假设是有色人种的居民 总体上经历更糟糕的症状结果，但这些差异将在很大程度上由NH种族解释 种族隔离。第二个假设是居民种族*居民之间会有互动效应。 ADRD身份和居民种族*NH种族隔离。目标2是让NH的利益相关者了解 在EOL患有ADRD的NH居民的痛苦症状方面的种族差异。通过半结构化 与种族隔离的利益相关者(例如，居民、家人、朋友、护理人员、管理人员)进行访谈 NHS，AIM 2将探讨利益相关者对痛苦症状如何影响EOL居民的看法和因素 与ADRD地位、种族和种族隔离有关的令人痛苦的症状的差异。 结果将通过具体说明利益相关者对哪些症状的看法来为未来的研究提供信息 生活在种族隔离的国民健康保险制度中的居民的痛苦以及造成多方面差异的潜在原因 级别。这项奖学金将为学员提供健康公平、EOL护理研究和使用 丰富的MDS数据集，开始了护理科学家的职业生涯。调查结果将确定EOL护理的关键领域 改善和解决卫生公平的障碍，以减少在EOL患有ADRD的NH居民的痛苦。

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.