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）姑息治疗和临终关怀特别研究中心的总体目标是为肾脏病学界提供关于终末期肾病（ESRD）护理领域的新颖、严格和具有全国代表性的信息，目前可用于指导政策和实践的信息很少。美国成人ESRD患者的中位生存期约为36个月，远低于越来越多开始透析的高龄患者的中位生存期。年轻和老年终末期肾病患者都承担着严重的合并症、残疾和虚弱的负担，而医疗保健利用和费用非常高。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型与旨在减轻痛苦和优化生活质量的更姑息性的以患者为中心的方法相结合。在接受慢性透析的患者中，全国临终关怀使用率极低，生命最后一个月的侵入性干预率远高于其他慢性生命限制性疾病患者，这表明可能存在系统性失败，无法识别和应对终末期肾病患者的临终关怀需求。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，提前护理计划的比例非常低;这些研究结果强调了重塑临终护理模式的至关重要的机会，以更好地与患者的价值观，目标和偏好保持一致，并减少生命结束时不必要的高强度护理。目前还没有关于终末期肾病患者姑息治疗和临终关怀的国家研究。单中心研究在很大程度上是横截面的，因此没有检查影响临终关怀下游模式的因素。为了解决这些知识差距，我们提出了一个综合研究议程，以解决以下具体目标：1）评估姑息治疗的需求，质量的沟通有关的临终关怀，预后的期望，并准备从事提前护理计划之间的全国代表性样本的终末期肾病患者; 2）评估美国ESRD成年人及其家庭的代表性国家样本的临终经历;评估ESRD患者的预先指示和姑息治疗咨询与下游医疗利用和成本之间的关系。我们将在国家ESRD患者及其家庭成员队列中进行前瞻性观察性研究，并对现有USRDS数据源进行补充性次要分析，以实现这些目标。总的来说，我们预计，这里提出的工作将有助于确定新的机会，改善和未来的干预，以提高姑息治疗和终末期肾病患者的生命护理的质量，并将作为一个持久的资源，为肾脏社区，以支持在这一领域正在进行的工作。

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.