Family Evaluation of Hospice Care

临终关怀的家庭评估

• 批准号: 8298462
• 负责人: JOAN M TENO
• 金额: $ 36.12万
• 依托单位: BROWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-09-30 至 2015-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8298462
• 关键词: Family; Evaluation; Hospice; Care

Project Summary/Abstract Approximately 2.5 million Americans die each year with nearly 1 million receiving end of life care from hospice. Recent concerns with hospice quality have resulted in MedPAC's call for the public reporting of hospice quality. Furthermore, MedPAC noted the collaboration between Brown University and National Hospice and Palliative Care Organization (NHPCO) to create the Family Evaluation of Hospice Care survey (FEHC) as a potential candidate measure for public reporting. The FEHC was created in 1999 with the widespread adoption by NHPCO in 2004. One-third of the hospice programs in the US uses the survey and contributes approximately 200,000 surveys annually to a voluntary repository maintained by the NHPCO. Since the creation of the survey, important changes have occurred in the hospice industry. First, the emerging sites of death for hospice patients are nursing homes (22%) and hospice inpatient units (IPU) (21%). Second, the FEHC was developed prior to the National Consensus Project and the National Quality Forum endorsed National Framework and Preferred Practices in Palliative Care. Third, the core FEHC items need to be updated from a patient safety perspective. With the emergence of the hospice IPU as a site of death, new questions that focus on patient safety with health care transitions are needed. While the nursing home and hospice IPU are emerging sites of care, 57% of hospice patients still die at home. Patient safety and the concern that the hospice patient receives the "right care at the right time" is largely based on how well hospice staff educates and prepares the family caregiver in providing care as well as knowing when to call the hospice for help. New survey items will address these patient safety concerns. We propose through an expert panel, updated structured literature review, focus groups, cognitive testing, and a validation study to update the core content of the FEHC and create two instruments to address the emerging sites of hospice care, including addressing health care transitions to those sites. We will recruit 390 bereaved family members from five hospice programs with ethnically diverse patient populations to participate in a validation study that examines internal consistency, short term reliability, factorial validity, and construct validity of the new surveys and core items. Additionally, we propose two specific aims to focus on the stability of bereaved family members perceptions of the quality of care during bereavement and test whether the survey can be self-administered through the web with a mode test. At the end of this research, the validated surveys and a resource guide will be posted on a Brown University web site and on the NHPCO FEHC website to allow all hospice programs to utilize the revised instruments. Our proposed research aims to ensure that hospice care in the U.S. is patient centered and safe through providing tools to monitor hospice quality.

项目总结/摘要 每年约有250万美国人死亡，其中近100万人接受临终关怀。 最近对临终关怀质量的关注导致MedPAC呼吁公开报告临终关怀质量。 此外，MedPAC注意到布朗大学与国家临终关怀和姑息治疗中心之间的合作， 护理组织（NHPCO）创建临终关怀家庭评估调查（FEHC）作为一个潜在的 公开报告的候选措施。FEHC成立于1999年，被广泛采用， 2004年，NHPCO。美国三分之一的临终关怀项目使用了这项调查， 每年向NHPCO维护的自愿存储库提供200，000份调查。成立以来 调查显示，临终关怀行业发生了重大变化。首先，临终关怀的新兴死亡地点 病人是疗养院（22%）和临终关怀住院单位（伊普）（21%）。第二，开发了FEHC 在国家共识项目和国家质量论坛批准国家框架之前， 姑息治疗的首选实践。第三，核心FEHC项目需要从患者安全 perspective.随着临终关怀伊普作为死亡场所的出现，关注患者的新问题 需要医疗保健过渡的安全。虽然疗养院和临终关怀伊普是新兴的网站， 在护理方面，57%的临终关怀患者仍然死于家中。病人的安全和临终关怀病人收到的关注 “在正确的时间提供正确的护理”主要取决于临终关怀工作人员如何教育和准备家庭 照顾者在提供护理以及知道什么时候打电话给临终关怀寻求帮助。新的调查项目将解决 病人的安全问题。我们建议通过专家小组，更新结构化文献综述，重点 小组，认知测试和验证研究，以更新FEHC的核心内容，并创建两个 文书，以解决临终关怀的新兴网站，包括解决卫生保健过渡到 这些网站。我们将从五个临终关怀项目中招募390名失去亲人的家庭成员， 患者群体参与验证研究，检查内部一致性，短期可靠性， 因素效度和结构效度的新调查和核心项目。此外，我们还提出了两个具体的 旨在关注丧亲家庭成员对护理质量的看法的稳定性， 丧亲之痛，并测试调查是否可以通过网络与模式测试自我管理。在 研究结束后，经验证的调查和资源指南将发布在布朗大学的网站上 并在NHPCO FEHC网站上发布，以允许所有临终关怀计划使用修订后的工具。我们 一项拟议的研究旨在确保美国的临终关怀是以病人为中心的，通过提供 监测临终关怀质量的工具。