A Community-Developed, Culturally-Based PC Tele-Consult Program for African American and White Rural Southern Elders with a Life-limiting Illness. (Diversity Supplement)

一项由社区开发、基于文化的 PC 远程咨询计划，专为患有致命疾病的非裔美国人和南方白人农村老年人提供。

• 批准号: 10078033
• 负责人: Marie Anne Bakitas
• 金额: $ 16.82万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-21 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10078033
• 关键词: Address; African American; Age; Alabama; American; Americas; Caregiver Burden; Caregivers; Caring; Cessation of life; Collaborations; Communities; Community Hospitals; Consensus; Consultations; Cultural Diversity; Deep South; Diagnosis; Elderly; Emergency Situation; Ensure; Family; Family Caregiver; Future; Geography; Goals; Growth; Guidelines; Health Personnel; Health Professional; Health Services Accessibility; Healthcare Systems; Hospitalization; Hospitals; Individual; Institute of Medicine (U.S.); Intervention; Life; Mediator of activation protein; Medical; Methods; Minority; Minority Groups; Mississippi; Modeling; Outcome; Palliative Care; Participant; Patient Care; Patients; Population; Process; Provider; Public Health; Quality of Care; Quality of life; Randomized Controlled Trials; Recommendation; Reporting; Research Design; Resources; Rural; Rural Community; Rural Minority; Services; Shapes; Site; South Carolina; Structure; Symptoms; Teleconsultations; Testing; Visit; base; care coordination; clinical care; design; efficacy testing; end of life care; ethnic diversity; experience; follow-up; high risk; hospice environment; hospital readmission; improved; innovation; intervention participants; nonmetropolitan area; palliative; preference; programs; racial diversity; response; rural Americans; rural patients; satisfaction; telehealth; theories; treatment as usual; treatment center; underserved minority

Rural patients with life-limiting illness are at very high risk of not receiving appropriate care due to a lack of health professionals, long distances to treatment centers, and limited palliative care (PC) clinical expertise. Although culture strongly influences people's response to diagnosis, illness and treatment preferences, culturally-based care models are not currently available for most seriously-ill rural patients and their family caregivers. Public health consequences of these problems are: 1) Access-Rural patients have sub-optimal or no access to PC and 2) Acceptability-Even when palliative and hospice services are available, African Americans (AA), compared to Whites (W) are more likely to receive poor quality care due to a culturally- insensitive health care system and mistrust of health care providers. As a result, rural patients, especially from minority groups, experience significant suffering from uncontrolled symptoms that PC expertise could alleviate. Our R21 Tele-consult pilot studyand our other telehealth RCTs have systematically incorporated diverse community stakeholder input on how to best design and deliver culturally-based palliative care for rural communities. Our Tele-consult Intervention was developed by and for rural, Deep South AA and W patients and providers, and uses state-of- the-art telehealth methods, to provide PC consultation to hospitalized seriously-ill patients and family. Using National Consensus Project guidelines that have been adapted through a culturally-based, community-developed CBPR process, we developed a PC Tele-consult intervention whereby a remote PC expert conducts a comprehensive PC patient assessment, in collaboration with local providers, and following interdisciplinary PC team review, makes recommendations. Two additional structured follow up contacts of PC expert with patient and local provider ensure care coordination and smooth transitions, allowing patients to receive guideline-concurrent PC care in their communities. We propose a three-site, randomized controlled trial to test the efficacy of a community-developed, culturally-based PC Tele-consult program for 352 hospitalized AA and W older adults with life-limiting illnesses. We have partnered with 3 rural, Deep South community hospitals, located in South Carolina, Alabama, and Mississippi that lack PC resources and recognize the potential benefits that PC expertise via Tele-consult can provide. Prior to study launch, we will assemble a local Community Advisory Group at each site to provide further input and assist in communicating study goals to patients. Study aims are to compare a robust, culturally-based PC Tele-consult program to usual hospital care to determine whether a culturally-based PC Tele-consult program leads to: 1. Lower symptom burden in hospitalized AA and W older adults with a life-limiting illness (primary aim) and 2. Higher patient and caregiver quality of life, care satisfaction, and lower caregiver burden at Day 7 post-consultation, and lower resource use 30-days post-discharge (secondary aim.) Impact: Ours is one of the first culturally-based palliative care Tele-consult programs developed by and for the rural southern AA and W populations it serves. This study will move the field forward by testing a promising culturally-based Tele-consult intervention that is scalable, and serves as a model for future culturally-based PC programs.

患有限制生命的疾病的农村病人由于缺乏适当的医疗服务， 卫生专业人员，距离治疗中心很远，以及有限的姑息治疗（PC）临床专业知识。 虽然文化强烈影响人们对诊断、疾病和治疗偏好的反应， 目前，大多数农村重病患者及其家庭无法获得基于文化的护理模式 照顾者这些问题的公共卫生后果是：1）农村病人有次优或 无法获得个人电脑和2）可接受性-即使在姑息治疗和临终关怀服务，非洲 美国人（AA），与白人（W）相比，更有可能接受质量差的护理，因为文化- 不敏感的卫生保健系统和对卫生保健提供者的不信任。因此，农村患者，特别是来自 少数群体，经历严重的痛苦，不受控制的症状，PC的专业知识可以减轻。 我们的R21远程咨询试点研究和其他远程医疗RCT系统地整合了各种 社区利益攸关方就如何最好地为农村社区设计和提供基于文化的姑息治疗提供投入。我们 远程咨询干预是由农村，深南AA和W患者和提供者开发的，并使用国家的， 先进的远程医疗方法，为住院重症患者及其家属提供PC咨询。利用国家 通过基于文化的社区发展的社区重建过程调整的共识项目指南， 我们开发了一个PC远程咨询干预，通过远程PC专家进行全面的PC患者 评估，与当地供应商合作，并遵循跨学科的PC团队审查，提出建议。 PC专家与患者和当地提供者的两个额外的结构化随访联系确保护理协调， 平稳过渡，使患者能够在其社区接受指南同步PC护理。 我们提出了一个三个地点，随机对照试验，以测试社区开发的，基于文化的， 为352名患有生命限制性疾病的住院AA和W老年人提供PC远程咨询计划。我们与3家 位于南卡罗来纳州、亚拉巴马和密西西比的农村、深南社区医院，缺乏PC资源， 认识到通过远程咨询的PC专业知识可以提供的潜在优势。在研究启动之前，我们将组装一个 每个研究中心的当地社区咨询小组提供进一步的输入，并协助向患者传达研究目标。 研究的目的是比较一个强大的，基于文化的PC远程咨询程序，以确定通常的医院护理， 基于文化的PC远程咨询程序是否会导致：1.住院AA和W老年人的症状负担较低 患有限制生命的疾病的成年人（主要目的）和2.更高的患者和护理人员的生活质量，护理满意度， 咨询后第7天的护理人员负担，出院后30天的资源使用较低（次要目的）。 影响：我们是第一个基于文化的姑息治疗远程咨询项目之一， 南方的AA和W种群。这项研究将通过测试一种有前途的基于文化的 远程咨询干预是可扩展的，并作为未来基于文化的PC程序的模型。