USRDS Special Study Center on Palliative and End-of-Life Care

描述(由申请人提供)：美国肾脏数据系统(USRDS)姑息和临终关怀特别研究中心的总体目标将是为肾病界提供有关终末期肾病(ESRD)护理领域的新的、严格的和具有全国代表性的信息，目前几乎没有信息可用于指导政策和实践。美国成年ESRD患者的中位生存期约为36个月，而越来越多的开始透析的高龄患者的中位生存期远远低于这一数字。ESRD的年轻患者和老年患者都肩负着严重的合并症、残疾和虚弱的负担，而医疗保健利用率和成本都非常高。这些现实表明，越来越需要一种更全面的ESRD护理方法，将现有的基于疾病的模式与更具姑息性的以患者为中心的方法相结合，旨在缓解痛苦和优化生活质量。在接受慢性透析的患者中，全国临终关怀使用率极低，在生命最后一个月期间进行侵入性干预的比率远远高于其他慢性限制生命的患者，这表明可能存在系统性未能认识到和应对终末期肾病患者的临终护理需求。来自单中心研究的证据表明，ESRD患者对其预后的预期过于乐观，提前护理计划率非常低；这些发现突显了一个至关重要的机会，可以重塑临终关怀的模式，以更好地与患者的价值观、目标和偏好保持一致，并减少不必要的高强度临终关怀。目前还没有关于ESRD患者的姑息和临终关怀的全国性研究。单中心研究在很大程度上是横断性的，因此没有研究影响临终关怀下游模式的因素。为了解决这些知识差距，我们提出了一项综合研究议程，以解决以下具体目标：1)评估在具有全国代表性的ESRD患者样本中的姑息治疗需求、关于临终关怀的沟通质量、预后预期以及是否准备参与提前护理计划；2)评估具有代表性的美国ESRD成年患者及其家属的临终体验；以及3)评估提前指令和姑息治疗咨询与ESRD患者下游医疗利用和成本之间的关系。我们将在ESRD患者及其家庭成员的国家队列中进行前瞻性观察研究，并对现有的USRDS数据源进行补充二次分析，以实现这些目标。总体而言，我们预计这里提出的工作将有助于确定改善和未来干预的新机会，以提高终末期肾病患者的姑息和临终护理的质量，并将成为肾脏社区支持这一领域正在进行的工作的持久资源。

DESCRIPTION (provided by applicant): The overarching goal of the United States Renal Data System (USRDS) Special Study Center on Palliative and End-of-Life Care will be to provide the nephrology community with novel, rigorous and nationally representative information about a domain of end-stage renal disease (ESRD) care for which little information is currently available to guide policy and practice. The median survival of US adults with ESRD is approximately 36 months and far less than this for the growing number of very elderly patients initiating dialysis. Both younger and older patients with ESRD shoulder a significant burden of comorbidity, disability and frailty, while healthcare utilization and costs are exceedingly high. These realitie signal a growing need for a more comprehensive approach to ESRD care that integrates existing disease-based models with a more palliative patient-centered approach intended to relieve suffering and optimize quality of life. National rates of hospice use are extremely low among patients receiving chronic dialysis and rates of invasive interventions during the final month of life are much higher than for patients with other chronic life-limiting conditions, suggesting that there may be a systematic failure to recognize and respond to end-of-life care needs for patients with ESRD. Evidence from single center studies suggest that patients with ESRD have overly optimistic expectations about their prognosis and very low rates of advance care planning; these findings highlight a critically important opportunity to reshape patterns of end-of-life care to better align with patient values, goals and preferences and to reduce unwanted high intensity care at the end of life. There have been no national studies of palliative and end-of-life care in patients with ESRD. Single center studies have been largely cross-sectional, and thus have not examined factors that shape downstream patterns of end-of-life care. To address these knowledge gaps we propose an integrated research agenda to address the following specific aims: 1) to evaluate the palliative care needs, quality of communication about end-of-life care, prognostic expectations, and readiness to engage in advance care planning among a nationally representative sample of ESRD patients; 2) to evaluate the end-of-life experience of a representative national sample of US adults with ESRD and their families; and 3) to assess the relationship between advance directives and palliative care consultations with downstream healthcare utilization and costs in patients with ESRD. We will conduct prospective observational studies among national cohorts of ESRD patients and their family members and complementary secondary analyses of existing USRDS data sources to accomplish these aims. Collectively, we anticipate that the work proposed here will help to identify novel opportunities for improvement and future intervention to enhance the quality of palliative and end-of-life care in patients with ESRD and will serve as an enduring resource for the renal community to support ongoing work in this area.