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

一个由社区开发、基于文化的 PC 远程咨询计划，为患有致命疾病的非裔美国人和白人南方农村老年人提供服务

• 批准号: 10405269
• 负责人: Marie Anne Bakitas
• 金额: $ 15.54万
• 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/10405269
• 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; Rural Population; Services; Shapes; Site; South Carolina; Structure; Symptoms; Testing; Visit; base; care coordination; clinical care; cultural competence; 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; teleconsultation; 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.

由于缺乏医疗服务，患有致命疾病的农村患者得不到适当护理的风险非常高 卫生专业人员、距治疗中心较远以及姑息治疗 (PC) 临床专业知识有限。 尽管文化强烈影响人们对诊断、疾病和治疗偏好的反应， 目前，对于大多数重病农村患者及其家人来说，基于文化的护理模式尚不可用 照顾者。这些问题对公共卫生造成的后果是： 1) 农村患者的医疗服务水平欠佳或 无法使用 PC 和 2) 可接受性——即使有姑息治疗和临终关怀服务，非洲人 与白人 (W) 相比，美国人 (AA) 由于文化差异而更有可能接受质量较差的护理 医疗保健系统不敏感和对医疗保健提供者的不信任。因此，农村患者，尤其是来自农村的患者 少数群体遭受着不受控制的症状的严重困扰，而 PC 专业知识可以缓解这些症状。 我们的 R21 远程咨询试点研究和其他远程医疗随机对照试验系统地纳入了不同的研究 社区利益相关者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意见。我们的 远程咨询干预是由农村、AA 州和 W 州南部腹地的患者和提供者开发的，并使用最新状态的 最先进的远程医疗方法，为住院的重病患者及其家属提供电脑咨询。使用国家 通过基于文化、社区制定的 CBPR 流程调整的共识项目指南， 我们开发了 PC 远程咨询干预，由远程 PC 专家对 PC 患者进行全面的咨询 与当地提供商合作进行评估，并在跨学科 PC 团队审查后提出建议。 PC 专家与患者和当地医疗服务提供者之间的另外两个结构化后续联系可确保护理协调和 平稳过渡，使患者能够在社区中接受与指南同步的 PC 护理。 我们提出了一项三中心随机对照试验，以测试社区开发的、基于文化的方法的有效性 为 352 名患有致命疾病的 AA 和 W 住院老年人提供 PC 远程咨询计划。我们已与3家合作 位于南卡罗来纳州、阿拉巴马州和密西西比州的农村、深南社区医院，缺乏 PC 资源， 认识到通过电话咨询获得 PC 专业知识可以带来的潜在好处。在研究启动之前，我们将组装一个 每个中心的当地社区咨询小组提供进一步的意见并协助向患者传达研究目标。 研究目的是将强大的、基于文化的 PC 远程咨询计划与常规医院护理进行比较，以确定 基于文化的 PC 远程咨询计划是否会带来： 1. 降低住院 AA 和 W 老年人的症状负担 患有限制生命疾病的成年人（主要目标）以及 2. 患者和护理人员的生活质量、护理满意度更高，并且护理满意度更低 咨询后第 7 天的护理人员负担，出院后 30 天减少资源使用（次要目标。） 影响：我们的项目是由农村地区开发并为农村地区开发的首批基于文化的姑息治疗远程咨询项目之一 它服务于 AA 南部和 W 人口。这项研究将通过测试一种有前途的基于文化的方法来推动该领域的发展 可扩展的远程咨询干预，可作为未来基于文化的 PC 项目的模型。