Family Evaluation of Hospice Care

描述（由申请人提供）：每年约有250万美国人死亡，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组织（NHPCO）合作创建了临终关怀家庭评估调查（FEHC），作为公开报告的潜在候选措施。FEHC创建于1999年，2004年被NHPCO广泛采用。美国三分之一的临终关怀计划使用该调查，每年向NHPCO维护的自愿存储库提供约20万份调查。自调查创建以来，临终关怀行业发生了重大变化。首先，临终关怀患者的新死亡地点是疗养院（22%）和临终关怀住院单位（伊普）（21%）。其次，FEHC是在全国共识项目之前制定的，全国质量论坛批准了姑息治疗的国家框架和首选实践。第三，需要从患者安全的角度更新核心FEHC项目。随着临终关怀伊普作为死亡场所的出现，需要关注医疗保健过渡期患者安全的新问题。虽然疗养院和临终关怀伊普是新兴的护理场所，但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在正确的时间接受正确的护理的关注，很大程度上取决于临终关怀工作人员如何教育和准备家庭照顾者提供护理，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这些患者安全问题。我们建议通过专家小组，更新结构化文献综述，焦点小组，认知测试和验证研究来更新FEHC的核心内容，并创建两个工具来解决临终关怀的新兴站点，包括解决向这些站点的医疗保健过渡。我们将从五个临终关怀项目中招募390名丧失亲人的家庭成员，这些项目具有不同种族的患者人群，他们将参与一项验证研究，该研究将检查新调查和核心项目的内部一致性、短期可靠性、因子效度和结构效度。此外，我们提出了两个具体的目标，专注于丧亲之痛的家庭成员的护理质量的看法的稳定性和测试是否可以通过网络与模式测试的自我管理的调查。在这项研究结束时，经过验证的调查和资源指南将张贴在布朗大学的网站和NHPCO FEHC网站上，以允许所有临终关怀计划利用修订后的工具。我们提出的研究旨在确保临终关怀在美国是以病人为中心，通过提供工具来监测临终关怀质量和安全。 公共卫生相关性：临终关怀现在提供临终关怀的人谁死在美国近一半的家庭评估临终关怀调查是免费的，并广泛使用的临终关怀。自创建以来近十年，我们建议更新调查，以涵盖两个新兴的护理场所（疗养院和独立的临终关怀单位），并修改调查的核心项目，以解决患者的安全问题，并纳入新的实践指南从全国共识项目和NQF认可的姑息治疗首选实践。这笔赠款将创建两个调查，并修改核心调查，这将有助于临终关怀监测和提高他们的护理质量。

DESCRIPTION (provided by applicant): 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 member's 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. PUBLIC HEALTH RELEVANCE: Hospice now provides end-of-life care for almost one half of the persons who die in the U.S. The Family Evaluation of Hospice Care survey is available for free and widely used by hospices. Nearly a decade since its creation, we propose to update the survey to cover two emerging sites of care (nursing homes and free-standing hospice units) and modify the core items of the survey to address patient safety concerns and incorporate new practice guidelines from the National Consensus Project and the NQF-endorsed Preferred Practices in Palliative Care. This grant will create two surveys and modify the core surveys that will help hospices in monitoring and improving their quality of care.