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: 9789950
• 负责人: Marie Anne Bakitas
• 金额: $ 68.73万
• 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/9789950
• 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; 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; rural underserved; 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.

农村患有限制生命的疾病的患者由于缺乏适当的护理而面临着非常高的风险 医疗专业人员，距离治疗中心很远，以及有限的姑息治疗(PC)临床专业知识。 尽管文化强烈影响人们对诊断、疾病和治疗偏好的反应， 基于文化的护理模式目前不适用于大多数农村重病患者及其家人 照顾者。这些问题对公共卫生造成的后果是：1)获得--农村患者有次优或 无法使用PC和2)可接受性--即使在提供姑息治疗和临终关怀服务时也是如此，非洲 与白人(W)相比，美国人(AA)更有可能接受低质量的医疗服务，因为文化上- 对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，特别是来自 少数群体经历了严重的失控症状，个人电脑的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我们的其他远程医疗随机对照试验系统地纳入了各种 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意见。我们的 远程会诊干预是由农村、深南AA和W患者和提供者开发的，并为他们开发的，并使用状态 最先进的远程医疗方法，为住院的危重病人和家属提供PC会诊。使用National 协商一致的项目指南，已通过基于文化的、社区开发的CBPR过程进行调整， 我们开发了PC远程咨询干预，由远程PC专家指导全面的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。 另外两名PC专家与患者和当地提供商的结构化后续联系可确保护理协调和 平稳过渡，允许患者在其社区接受指南并行的PC护理。 我们提出了一项三点随机对照试验来测试社区发展的、以文化为基础的 PC远程咨询计划适用于352名住院的AA和W老年人，他们患有限制生命的疾病。我们已与3家公司合作 位于南卡罗来纳州、阿拉巴马州和密西西比州的乡村、深南社区医院，缺乏PC资源和 认识到PC专业知识通过电话咨询可以提供的潜在优势。在研究启动之前，我们将组装一个 每个地点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。 研究的目的是将一个强大的、基于文化的个人电脑远程咨询计划与通常的医院护理进行比较，以确定 基于文化的个人电脑电话咨询计划是否导致：1.住院的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(主要目标)和2.患者和照顾者的生活质量较高，护理满意度较低 照顾者在会诊后第7天的负担，以及出院后30天较低的资源使用(次要目标)。 影响：我们是首批基于文化的姑息关怀电话咨询项目之一，由农村人开发，并为农村人开发 它为南部AA和W人群提供服务。这项研究将通过测试一种有前途的基于文化的 可扩展的远程咨询干预，可作为未来基于文化的PC项目的模式。