Family Evaluation of Hospice Care

描述（由申请人提供）：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注意到布朗大学和国家临终关怀和姑息治疗组织（NHPCO）之间的合作，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，并于2004年被NHPCO广泛采用。美国三分之一的临终关怀计划使用调查，每年向NHPCO维护的自愿资料库提供大约20万份调查。自调查开始以来，临终关怀行业发生了重大变化。首先，新出现的安宁疗护病人死亡地点是疗养院（22%）和安宁疗护住院单位（IPU）（21%）。其次，FEHC是在国家共识项目和国家质量论坛认可的国家姑息治疗框架和首选实践之前制定的。第三，需要从患者安全的角度更新FEHC核心项目。随着临终关怀IPU作为死亡场所的出现，需要关注患者安全与医疗保健过渡的新问题。虽然疗养院和临终关怀IPU是新兴的护理场所，但57%的临终关怀患者仍然在家中死亡。病人的安全，以及对安宁疗护病人在“正确的时间接受正确的疗护”的关心，在很大程度上是基于安宁疗护人员在提供疗护以及知道何时打电话给安宁疗护寻求帮助方面对家庭照护者的教育和准备程度。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、更新的结构化文献综述、焦点小组、认知测试和验证研究来更新FEHC的核心内容，并创建两种工具来解决临终关怀的新兴地点，包括解决这些地点的医疗保健过渡。我们将从5个不同种族病人群体的安宁疗护计划中招募390名丧亲家属参与验证研究，检验新问卷及核心项目的内部一致性、短期信度、因子效度及建构效度。此外，我们提出了两个具体目标，以关注丧亲家庭成员对丧亲期间护理质量感知的稳定性，并通过模式测试测试调查是否可以通过网络自我管理。在这项研究结束时，经过验证的调查和资源指南将发布在布朗大学网站和NHPCO FEHC网站上，以允许所有临终关怀项目使用修订后的工具。本研究旨在透过提供工具来监控安宁疗护的品质，以确保美国安宁疗护是以病人为中心且安全的。

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.