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: 10618964
• 负责人: Rashmi K. Sharma
• 金额: $ 58.87万
• 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/10618964
• 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; Inequity; Infrastructure; Intervention; Interview; Knowledge; Language; Latinx; Limited English Proficiency; Linguistics; Mediator; 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; Vietnamese; Vulnerable Populations; Work; advanced dementia; community engagement; community organizations; disparity elimination; effective intervention; end of life; end of life care; experience; health inequalities; high risk; improved; innovation; machine learning method; multidisciplinary; novel; preference; provider communication; 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.

项目摘要 患有阿尔茨海默氏病的老年人和相关痴呆症和限量英语水平（LEP） 由于语言和有效的文化障碍 有关护理目标的沟通。姑息治疗提供了一种改善生活质量并促进目标的方法 - 通过支持有效的人友善的沟通来进行一致的护理 患有痴呆和LEP及其家人的成年人。没有研究试图确定干预目标 在多个级别（即患者/家庭，临床医生，系统和社区）中解决姑息治疗的障碍 级别）对于这个脆弱的人群。解决这一差距对于发展有效至关重要 改善痴呆症和LEP老年人护理质量的干预措施。这个长期目标 工作是开发，评估和传播干预措施，以促进对文化敏感的姑息治疗 患有痴呆和LEP及其家人的老年人。这项研究的理由是在有效之前 在文化上和语言上适当的干预措施，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 不平等并确定可修改的多层次障碍，以提供高质量的姑息治疗 人口。 AIM 1利用定量方法比较了死者接受的护理质量 高级痴呆症和LEP，在四个关键姑息治疗领域具有英语能力的人（利用 护理，患者目标和偏好的记录，症状评估以及死亡情况） 使用基于EHR的质量指标和新颖的机器学习方法。 AIM 2利用定性访谈 与主要利益相关者（患有痴呆和LEP的老年人及其家人，案例工作者文化 调解人和口译员，临床医生和管理人员）确定可修改的目标以进行干预 跨多个级别。 AIM 3利用与社区组织的领导人进行定性访谈 评估社区级资源和支持老年人高质量姑息治疗的能力 痴呆和LEP。我们的跨学科团队在阿尔茨海默氏病和相关痴呆症中经验丰富 研究，社区与LEP人群的参与以及定量和定性方法。这 提案具有创新性，因为它评估了三种不同LEP的姑息治疗的多层次障碍 人口（拉丁裔，中文和越南语），并使用机器学习方法来评估 大型卫生系统中的几个姑息治疗领域的护理。拟议的研究很重要 因为这些数据将使多层目标的识别和优先级用于开发 在文化和语言上适当的干预措施，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，以促进目标符合，高质量的护理 对于患有痴呆症和LEP的老年人，并支持家人的姑息治疗需求。