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Abstract Background and Aims Dutch nephrology care aims for a more sustainable way of using outcome data. The national Dutch nephrology quality system includes guideline development, the Nefrodata registry (since 1986), outcome data benchmarking, and periodic peer audits for quality assessment of institutions providing (pre)dialysis care (since 1998). In the Santeon “Better Together” program multiple hospitals collect and share outcome data in a learning network for continuous improvement and personalization of care. We aimed to describe these two initiatives, to analyze their impact on clinical care and outcomes, and share lessons learned. Method We applied a mixed-method approach. Quantitative trends in clinical outcomes were analyzed from Nefrodata. In interviews, key players in the quality system were asked for successes, enablers and barriers. We included outcomes from recent programs by the Cooperating Registries and Dutch Kidney Patient Association [1, 2]. For Santeon, the use of outcome data in developing of the Kidney Failure Decision Aid, the CKD Dashboard, and quality improvement cycles were qualitatively analyzed for their success factors. Results Over the past two decades, the quality system has made significant progress. Registry checks and audits increased quality awareness, while benchmark reports enriched the local Plan-Do-Check-Act cycle. A nationwide survey showed that 93% of the dialysis centers discuss the benchmark report on a regular basis which led to improvement initiatives in 77% of the dialysis centers. Confidence within kidney care to discuss outcomes is high [1]. Remarkable improvements in trends in clinical outcomes are observed: dialysis initiation halved in older patients (≥65 years) in the past decade, dialysis mortality fell from 20% in 2000 to 10% in 2020, the number of kidney transplants increased since 2000 (see Fig. 1), and median dialysis time before transplantation decreased from 4 to 2.5 years (since 2011). Improvement techniques, shifts in dialysis population due to an increased choice for conservative treatment, and the quality system likely contributed to these changes. Enablers for the successes included collaboration with various professional and interest groups to ensure broad support, an open culture, and patient participation. Although, variation between centers in the use of outcome data in quality improvement remains. Also, the use of Registry outcomes in scientific publications and guideline development is still limited. The ’Better Together’ program improved shared decision-making, reduced decisional regret among patients, and slightly shifted choices between kidney transplantation and conservative care. Improvement cycles focused on vascular access care, residual diuresis preservation, and reduction of central venous catheter infections. The lessons learned for sustainable use of outcomes are summarized in eight general recommendations: (1) Start with establishing a quality framework, (2) Promote collaboration and support, (3) Involve patient representation and/or experienced individuals, (4) Establish a management process for the registration dataset, (5) Identify practice variation with benchmark reports, (6) Apply peer audits for quality assessment, (7) Apply transparency in a learning network, (8) Use outcome information for personalized care. To promote outcome data use in Dutch nephrology quality system for continuous learning and improvement, recommendations include fostering a quality mindset, expanding registries, aligning guidelines with registry and visitation outcomes, and scaling up the Kidney Failure Decision Aid and CKD Dashboard nationally. Conclusion Outcome data use in quality systems and learning hospital networks likely improves and personalizes CKD care. Dutch nephrology care managed to have a stable prevalence and decreased incidence of patients on dialysis, despite the aging of the population and prolonged survival on dialysis.
Published in: Nephrology Dialysis Transplantation
Volume 40, Issue Supplement_3