Supportive Care in Kidney Disease: Scope of Practice and Pilot Study of Implementation

慢性肾脏病（CKD）是一种全国性的健康流行病，影响着3000万美国人， 在少数种族和族裔人口中的比例过高。在其最先进的形式，CKD是 与生活质量差、压倒性的症状负担和高死亡率相关。姑息治疗，或 支持性护理是一个专业，具有症状管理，医疗决策援助， 制作和临终关怀。在肾脏疾病中，支持性治疗通常没有纳入标准治疗， 部分原因是缺乏证据和未能确定最佳交付模式。这一建议，“支持 CKD护理：实践范围和试点实施”旨在了解更多关于 支持性护理在当前肾脏病学实践中的应用，并测试实施综合护理的有效性 在我学习成为一名独立研究人员的基本培训技能的同时， 具体来说，这是一项针对辅导式职业发展奖的三个目标的研究，1）描述了当前 支持性治疗在非透析CKD患者护理中的整合范围及其与患者 通过分析具有国家代表性的数据库报告的结果; 2）测试 在CKD IV期或V期患者中，采用试验性随机化， 在城市安全网医院进行的对照试验;以及3）确定有效性或 通过应用定性和混合方法，未满足的支持性护理干预需求 方法论这三个目标将在完成互补培训目标的同时， 在定量数据库分析，临床试验执行， 定性和混合方法。 该提案的结果将为肾脏病学界提供有关传播的重要信息 非透析CKD护理中的支持性护理，有紧急支持性护理需求的人群。 此外，该分析将确定CKD和危重病患者获得支持性护理的差异。 缺乏支持性护理途径与患者报告的结果之间的关系。本研究的第二阶段将 通过测试实施支持性护理的有效性， 代表CKD人口统计学的多种族人群中的晚期CKD。获得的数据 从这三个目标中，将提供有关社区支持性护理资源的基本数据， 增加获得肾脏支持性治疗的潜在影响，实施新的 在这一人群中的支持性护理，以及设计更大的多- 中心试验。这些目标将在发展我作为独立研究人员的技能的同时实现， 使我能够将这些结果应用于明确的试验中，有可能广泛改善患者的护理， 许多美国人患有CKD。

Chronic kidney disease (CKD) is a national health epidemic impacting 30 million Americans, with a disproportionate representation in racial and ethnic minority populations. In its most advanced forms, CKD is associated with poor quality of life, overwhelming symptom burden, and a high mortality. Palliative, or supportive care, is a specialty that has expertise in symptom management, assistance in medical decision- making, and end-of-life care. In kidney disease, supportive care often is not integrated in the standard of care, partly due to lack of evidence and failure to identify an optimal model for its delivery. This proposal, “Supportive care in CKD: Scope of practice and pilot implementation” seeks to learn more about the integration of supportive care in current nephrology practice and test the effectiveness of implementing an integrated care model in advanced CKD, while I learn essential training skills to become an independent researcher. Specifically, this is a three-aim study for a mentored career development award that 1) Describes the current scope of integration of supportive care in the care of non-dialysis CKD patients and its association with patient reported outcomes through analysis of a nationally representative database; 2) Tests the effectiveness of integrating supportive care with usual nephrology care in CKD stage IV or V patients using a pilot randomized, controlled trial conducted in an urban safety net hospital; and 3) Determines the mechanism of effectiveness or unmet needs of the supportive care intervention through application of qualitative and mixed-methods methodology. These three aims will be achieved while completing complementary training aims in comparative effectiveness research with specific training in quantitative data base analysis, clinical trial execution, qualitative, and mixed methods methodology. The results of this proposal will provide essential information to the nephrology community about dissemination of supportive care in the care of non-dialysis CKD care, a population with urgent supportive care needs. Furthermore, this analysis will identify disparities in supportive care access in CKD and critical associations between lack of supportive care access and patient reported outcomes. The second phase of this study will move the field of nephrology forward by testing the effectiveness of implementation of supportive care in advanced CKD in a multi-ethnic population representative of the demographics of CKD. The data obtained from these three aims will provide essential data regarding supportive care resources in the community, the potential impact of increasing access to kidney supportive care, the feasibility of implementing new models of supportive care in this population, and the statistical information necessary for the design of larger multi- centered trials. These aims will be accomplished while developing my skills as an independent researcher and positioning me to apply these results in definitive trials with the potential to broadly improve the care of the many Americans suffering from CKD.