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

了解和改善晚期痴呆症和英语水平有限的老年人姑息治疗中的不平等：混合方法评估

• 批准号: 10468791
• 负责人: Rashmi K. Sharma
• 金额: $ 63.56万
• 依托单位: UNIVERSITY OF WASHINGTON
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-15 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10468791
• 关键词: Address; Administrator; Age; Alzheimer' s disease related dementia; Caring; Cessation of life; Chinese; Communication; Communities; Data; Dementia; Development; Diagnosis; Documentation; Education; Elderly; Electronic Health Record; Evaluation; Face; Family; Family Caregiver; Family member; Future; Gender; Goals; Health system; Healthcare; Infrastructure; Intervention; Interview; Knowledge; Language; Latinx; Limited English Proficiency; Linguistics; Mediator of activation protein; Methods; Mission; Modeling; Natural Language Processing; Outcome; Palliative Care; Patients; Personal Satisfaction; Persons; Population; Prognosis; Public Health; Qualitative Methods; Quality of Care; Quality of life; Reporting; Research; Research Personnel; Resources; Structure; Symptoms; System; Testing; Vulnerable Populations; Work; advanced dementia; base; community engagement; disparity elimination; effective intervention; end of life; end of life care; experience; high risk; improved; innovation; machine learning method; multidisciplinary; novel; preference; sociodemographic factors; symptom management; therapy development

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.

项目概要 患有阿尔茨海默病和相关痴呆症且英语水平有限 (LEP) 的老年人位于 由于有效的语言和文化障碍，接受次优、目标不一致的护理的风险很高 关于护理目标的沟通。姑息治疗提供了一种改善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一致的护理，但老年人没有充分利用 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目标 解决多个层面（即患者/家属、临床医生、系统和社区）姑息治疗的障碍 水平）针对这一弱势群体。解决这一差距对于制定有效的 旨在提高患有痴呆症和 LEP 的老年人的护理质量的干预措施。本次活动的长远目标 工作是制定、评估和传播干预措施，以促进对文化敏感的姑息治疗 患有痴呆症和 LEP 的老年人及其家人。这项研究的理由是，在有效之前 适合文化和语言的干预措施，以改善痴呆症老年人的姑息治疗 可以开发LEP，需要定量和定性数据来评估现有的范围 不平等现象，并确定为此提供高质量姑息治疗的可改变的多层次障碍 人口。目标 1 利用定量方法比较死者所接受的护理质量 为那些在四个关键姑息治疗领域具有英语水平的人提供高级痴呆症和 LEP（利用 护理、患者目标和偏好的记录、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（患有痴呆症和 LEP 的老年人及其家庭成员、社会工作者文化 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 跨越多个层面。目标 3 利用对社区组织领导人的定性访谈来 评估社区一级的资源和能力，以支持对患有老年痴呆症的老年人提供高质量的姑息治疗 痴呆症和 LEP。我们的跨学科团队在阿尔茨海默氏病和相关痴呆症方面拥有丰富的经验 研究、LEP 群体的社区参与以及定量和定性方法。这 该提案具有创新性，因为它评估了三个不同 LEP 中姑息治疗的多层次障碍 人群（拉丁裔、中国人和越南人），并使用机器学习方法来评估 大型卫生系统中多个姑息治疗领域的护理。拟议的研究意义重大 因为这些数据将有助于确定发展的多层次目标并确定其优先顺序 适合文化和语言的干预措施，以改善痴呆症老年人的姑息治疗 和 LEP。最终，这项工作将推进一种护理模式，促进目标一致的高质量护理 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。