Advance preparation for initiating renal replacement therapy (RRT) in patients with progressive chronic kidney disease (CKD), including management of co-morbid clinical conditions and informed decision-making about RRT modalities, represents a cornerstone of optimal therapy and is associated with significant health benefits. However, many patients, especially ethnic/race minorities, are not well prepared for RRT initiation, contributing to poor clinical outcomes and suboptimal access to self-care dialysis and transplants. Evidence suggests early, shared, and informed decision-making (SDM) (between patients, their families and their health care providers) about preparation for RRT initiation could improve patients RRT preparation outcomes (including management of blood pressure and anemia, use of permanent vascular access at RRT initiation, and selection of RRT modalities consistent with patients'values). Despite this, many patients have minimal or late preparation without significant collaborative involvement of family or health care providers (such as primary care providers) with whom patients have long-established, trusted relationships. Patients'suboptimal early SDM regarding RRT preparation is likely attributable to barriers at the system (e.g., few structural mechanisms to encourage multidisciplinary collaborative decision-support), provider (e.g., inadequate skills to effectively engage patients in shared and informed decisions), and patient (e.g., poorly tailored support for decision-making needs) levels. We have developed a highly innovative approach (simultaneously performing two complimentary pilot studies) to quantify the effectiveness and sustainability of integrating system, provider, an patient interventions to improve early SDM about RRT among US patients. Study interventions will target key system, provider, and patient barriers to SDM, enhancing interventions'potential effectiveness and sustainability. The studies will incorporate a quasi-experimental study (testing the feasibility, effectiveness and sustainability of integrating system and provider interventions) and a randomized controlled trial (studying the incremental benefit of tailored, patient-centered patient educational materials) to study intervention effectiveness, which we will assess by measuring practice- level indicators of RRT preparation quality and patients'achievement of clinical measures of RRT preparedness. Our findings will inform the conduct of a national study of the dissemination of these interventions across diverse US clinical settings. We have assembled a multidisciplinary team well suited to successfully carry out the proposed aims with extensive expertise in studying system, provider, and patient influences on CKD care as well as in the development and conduct of interventions to improve patients'SDM about RRT and the conduct of large multicenter clinical trials.

Public Health Relevance

Many patients with kidney require renal replacement therapy (RRT) (i.e., hem dialysis, transplant, or medical management), but studies show patients are often psychologically and physically unprepared for RRT, which leads to their poor health outcomes. This project aims to help patients with chronic kidney disease get better prepared for starting renal replacement therapy (RRT). We will test strategies in health care clinics, among health care providers, and among patients to improve patients'RRT preparation.

National Institute of Health (NIH)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Planning Grant (R34)
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Special Emphasis Panel (ZDK1-GRB-R (O1))
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Narva, Andrew
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Johns Hopkins University
Internal Medicine/Medicine
Schools of Medicine
United States
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Navaneethan, Sankar D; Boulware, L Ebony; Sedor, John R (2015) Patients as stakeholders in setting kidney disease research priorities. Am J Kidney Dis 65:641-3
Greer, Raquel C; Ameling, Jessica M; Cavanaugh, Kerri L et al. (2015) Specialist and primary care physicians' views on barriers to adequate preparation of patients for renal replacement therapy: a qualitative study. BMC Nephrol 16:37
Crews, Deidra C; Liu, Yang; Boulware, L Ebony (2014) Disparities in the burden, outcomes, and care of chronic kidney disease. Curr Opin Nephrol Hypertens 23:298-305