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

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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.