Family Evaluation of Hospice Care

项目摘要/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担忧导致MedPAC呼吁对临终关怀质量进行公开报告。 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 关怀组织(NHPCO)将创建家庭临终关怀评估调查(FEHC)作为潜在的 公共报道的候选措施。FEHC成立于1999年，广泛采用 NHPCO在2004年。美国三分之一的临终关怀项目使用这项调查，并贡献了大约 每年向NHPCO维护的一个自愿储存库发送20万份调查。自创建了 调查显示，临终关怀行业发生了重要变化。首先，临终关怀的新兴死亡地点 患者是疗养院(22%)和临终关怀病房(IPU)(21%)。第二，开发了FEHC 在国家共识项目和国家质量论坛通过国家框架和 姑息治疗中的首选做法。第三，核心FEHC项目需要从患者安全的角度进行更新 透视。随着临终关怀议会联盟作为死亡地点的出现，聚焦于患者的新问题 安全与医疗保健的过渡是必要的。而疗养院和临终关怀议会联盟是新兴的 护理，57%的临终关怀患者仍然死在家里。患者安全和临终关怀患者受到的关注 “在正确的时间提供正确的护理”在很大程度上取决于临终关怀人员对家庭的教育和准备程度。 护理员在提供护理的同时知道何时打电话给临终关怀中心寻求帮助。新的调查项目将解决 这些病人的安全顾虑。我们建议通过专家小组，更新结构化文献审查，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 应对新出现的临终关怀场所的工具，包括解决医疗过渡到 那些网站。我们将从五个不同种族的临终关怀项目中招募390名丧失亲人的家庭成员 患者群体参与一项验证性研究，检查内部一致性、短期可靠性、 因子效度，以及新问卷和核心条目的结构效度。此外，我们还提出了两个具体的 旨在关注稳定丧亲家属对期间护理质量的认知 并测试该调查是否可以通过网络进行自我管理，并进行模式测试。在 这项研究结束后，经过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网站上允许所有临终关怀项目使用修订后的仪器。我们的 拟议的研究旨在确保美国的临终关怀是以患者为中心的，通过提供 监控临终关怀质量的工具。

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.