Improving Serious Illness Care for Underserved Populations: Patient and Caregiver Experience with Tele-Palliative Care

改善服务不足人群的重病护理：患者和护理人员的远程姑息护理体验

• 批准号: 10635741
• 负责人: Julia Bandini
• 金额: $ 58.1万
• 依托单位: RAND CORPORATION
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-19 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10635741
• 关键词: Academic Medical Centers; Address; Adult; Advance Care Planning; Area; COVID-19 pandemic; Caregivers; Caring; Communication; Communities; Consensus; Effectiveness; Enrollment; Ethnic Origin; Family; Family Caregiver; Feeling; Goals; Health Personnel; Health system; Healthcare; Hearing; Human; Improve Access; Inequity; Interview; Life; Limited English Proficiency; Measures; Methods; Modality; Outpatients; Pain intensity; Pain management; Palliative Care; Patient Care; Patients; Persons; Population; Process; Prognosis; Prospective, cohort study; Quality of Care; Quality of life; Recommendation; Reporting; Research; Risk; Rural; Sampling; Site; Socioeconomic Status; Spirituality; Surveys; Testing; Trust; Underserved Population; Visit; Work; care providers; care systems; cohort; cultural competence; end of life; end of life care; end-of-life communication; ethnic minority; experience; health disparity; improved; low socioeconomic status; marginalization; medical specialties; metropolitan; multidisciplinary; pain reduction; patient-clinician communication; poor health outcome; preference; programs; racial difference; racial minority; rural area; rural dwellers; rural setting; symptom management; telehealth; time use; virtual

Project Abstract There is significant unmet need among seriously ill patients and gaps in quality of communication with health care providers, which are particularly pronounced among historically underserved populations, including patients of racial/ethnic minorities, low socioeconomic status (SES), limited English proficiency (LEP), and those who live in rural areas who are underserved in health care. For patients suffering from serious illness, palliative care provides expert pain and symptom management and planning for end-of-life care. In particular, palliative care offered via telehealth may improve access to outpatient palliative care services, which are predominantly offered in large academic medical centers in metropolitan areas. Despite an increase in telehealth for outpatient palliative care since the beginning of the COVID-19 pandemic, little is known about the perspectives of historically underserved patients on modality of palliative care and how communication may be impacted by a virtual mode of delivery for these patients who already experience inequities in receipt of goal-concordant care. In this prospective cohort study, we will enroll a cohort of adult patients referred to outpatient palliative care who are of low SES, non-White, LEP, or rurally-residing communities to compare care experiences of in-person versus tele-palliative care visits provided to historically underserved patients and their caregivers and understand the nuances around their needs and preferences for modality of care. Using mixed methods we will 1) evaluate both patient- and caregiver-reported experience with in-person and tele- palliative care over time using patient and caregiver-specific surveys and in-depth interviews with patients and caregivers; 2) compare communication quality and use of recommended communication processes between in- person and tele-palliative care using an analysis of recorded in-person and telehealth visits; and 3) examine perspectives of in-person visits versus tele-palliative care including perceived barriers and facilitators to both modes of delivery using qualitative interviews with palliative care providers. The proposed research will improve understanding of the experiences of historically underserved patients and their family caregivers to address issues around mode of delivery of palliative care. Findings will provide a roadmap for health systems to improve patient-provider communication and identify strategies to promote cultural competence to improve experience and overall quality of palliative care delivered both in person and via telehealth.

项目摘要 重病患者的需求明显未得到满足，与健康部门的沟通质量存在差距 护理提供者，这在历史上服务不足的人群中尤为明显，包括 少数种族/族裔患者、社会经济地位较低 (SES)、英语水平有限 (LEP) 和 那些生活在农村地区、医疗保健服务不足的人。对于患有严重疾病的患者来说， 姑息治疗提供专业的疼痛和症状管理以及临终关怀规划。尤其， 通过远程医疗提供的姑息治疗可以改善获得门诊姑息治疗服务的机会，这些服务是 主要在大都市地区的大型学术医疗中心提供。尽管增加了 自 COVID-19 大流行开始以来，对于门诊姑息治疗的远程医疗，人们知之甚少 历史上服务不足的患者对姑息治疗方式以及沟通方式的看法 对于这些已经在接收方面经历不平等的患者来说，可能会受到虚拟分娩模式的影响 目标一致的护理。在这项前瞻性队列研究中，我们将招募一组成年患者，称为 低 SES、非白人、LEP 或农村居住社区的门诊姑息治疗进行比较 向历史上服务不足的患者提供面对面护理与远程姑息护理访问的护理体验，以及 他们的护理人员并了解他们的需求和护理方式偏好的细微差别。使用 采用混合方法，我们将 1) 评估患者和护理人员报告的面对面和远程体验。 随着时间的推移，通过针对患者和护理人员的调查以及对患者和护理人员的深入访谈来提供姑息治疗 照顾者； 2) 比较内部人员之间的通信质量和推荐通信流程的使用情况 通过分析记录的现场和远程医疗就诊进行个人和远程姑息治疗； 3）检查 面对面就诊与远程姑息治疗的观点，包括感知到的障碍和促进因素 通过与姑息治疗提供者进行定性访谈来确定交付方式。拟议的研究将 增进对历史上服务不足的患者及其家庭护理人员经历的了解 解决有关姑息治疗提供方式的问题。调查结果将为卫生系统提供路线图 改善患者与提供者的沟通并确定促进文化能力的策略 亲自和通过远程医疗提供的姑息治疗的经验和整体质量。