Understanding and Improving Inequities in Palliative Care for Older Adults with Advanced Dementia and Limited-English Proficiency: A Mixed-Methods Evaluation

项目摘要 患有阿尔茨海默病和相关痴呆症以及英语水平有限（LEP）的老年人在 由于语言和文化障碍，接受次优、目标不一致的护理的风险很高， 沟通护理目标。姑息治疗提供了一种提高生活质量和促进目标的方法- 通过支持有效的个人-家庭-临床医生沟通来提供协调的护理，但老年人未充分利用 患有痴呆症和LEP的成年人及其家人。没有研究试图确定干预的目标， 在多个层面解决姑息治疗的障碍（即，患者/家庭、临床医生、系统和社区- #21453;，这一弱势群体。解决这一差距对于发展有效的 干预措施，以提高老年痴呆症和LEP的护理质量。长期目标是 工作是制定，评估和传播干预措施，以促进文化敏感的姑息治疗， 患有痴呆症和LEP的老年人及其家人。这项研究的基本原理是， 文化和语言上适当的干预措施，以改善老年痴呆症患者的姑息治疗 和LEP可以开发，需要定量和定性数据来评估现有的 不公平现象，并确定可改变的多层次障碍，以提供高质量的姑息治疗， 人口目的1利用定量方法比较死者接受的护理质量， 晚期痴呆症和LEP的四个关键姑息治疗领域的英语熟练程度（利用 护理、记录患者目标和偏好、症状评估和死亡情况） 使用基于EHR的质量指标和新颖的机器学习方法。目标2利用定性访谈 与主要利益相关者（老年痴呆症和LEP患者及其家庭成员，个案工作者-文化 调解员和口译员，以及临床医生和管理人员），以确定可修改的干预目标 在多个层面上。目标3利用对社区组织领导人的定性访谈， 评估社区一级的资源和能力，以支持老年人的高质量姑息治疗， 痴呆和LEP。我们的跨学科团队在阿尔茨海默病和相关痴呆症方面经验丰富 研究，与LEP人群的社区参与，以及定量和定性方法。的 该提案具有创新性，因为它评估了三种不同LEP中姑息治疗的多层次障碍 人口（拉丁美洲人，中国人和越南人），并使用机器学习方法来评估 在一个大型卫生系统的几个姑息治疗领域的护理。所提出的研究是有意义的 因为这些数据将有助于确定和优先考虑发展的多层次目标， 文化和语言上适当的干预措施，以改善老年痴呆症患者的姑息治疗 和LEP。最终，这项工作将推进一种护理模式，促进目标一致，高质量的护理 为患有痴呆症和LEP的老年人提供服务，并支持其家庭成员的姑息治疗需求。

PROJECT SUMMARY Older adults with Alzheimer's Disease and Related Dementias and limited-English proficiency (LEP) are at high risk of receiving suboptimal, goal-discordant care because of language and cultural barriers to effective communication about goals of care. Palliative care provides a way to improve quality of life and facilitate goal- concordant care by supporting effective person-family-clinician communication, but is under-utilized by older adults with Dementia and LEP and their families. No studies have sought to identify targets for intervention to address barriers to palliative care at multiple levels (i.e., patient/family, clinician, system, and community- levels) for this vulnerable population. Addressing this gap will be essential for the development of effective interventions to improve the quality of care for older adults with Dementia and LEP. The long-term goal of this work is to develop, evaluate, and disseminate interventions to facilitate culturally-sensitive palliative care for older adults with Dementia and LEP and their families. The rationale for this study is that before effective culturally- and linguistically-appropriate interventions to improve palliative care for older adults with Dementia and LEP can be developed, quantitative and qualitative data is needed to evaluate the scope of existing inequities and identify modifiable multi-level barriers to the delivery of high-quality palliative care for this population. Aim 1 utilizes quantitative methods to compare the quality of care received by decedents with advanced Dementia and LEP to those with English proficiency in four key palliative care domains (utilization of care, documentation of patient goals and preferences, symptom assessment, and circumstances of death) using EHR-based quality metrics and novel machine learning methods. Aim 2 utilizes qualitative interviews with key stakeholders (older adults with Dementia and LEP and their family members, caseworker-cultural mediators and interpreters, and clinicians and administrators) to identify modifiable targets for intervention across multiple levels. Aim 3 utilizes qualitative interviews with leaders of community-based organizations to assess community-level resources and capacity to support high quality palliative care for older adults with Dementia and LEP. Our interdisciplinary team is experienced in Alzheimer's Disease and Related Dementia research, community engagement with LEP populations, and quantitative and qualitative methods. The proposal is innovative because it evaluates multi-level barriers to palliative care across three diverse LEP populations (Latinx, Chinese, and Vietnamese), and uses machine learning methods to evaluate the quality of care across several palliative care domains in a large health system. The proposed research is significant because these data will enable the identification and prioritization of multi-level targets for the development of culturally and linguistically-appropriate interventions to improve palliative care for older adults with Dementia and LEP. Ultimately, this work will advance a model of care that facilitates goal-concordant, high-quality care for older adults with Dementia and LEP and supports the palliative care needs of their family members.