The Improving Renal Outcomes Collaborative: Improving Health, Longevity, and Quality of Life for Children and Young Adults with Kidney Transplants
- Informational Posters - III
November 04, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
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- Hooper, David K., Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States
- Swiatecka-Urban, Agnieszka, University of Virginia, Charlottesville, Virginia, United States
Background: Children with a kidney transplant have a life expectancy that is 15 years less than children without chronic illness. Adolescents with a KT are 3 times more likely to lose their allograft than any other age demographic, leading to further declines in health, longevity, and quality of life. Up to 60% have uncontrolled blood pressure associated with cardiovascular disease and decreased allograft survival.
Methods: The Improving Renal Outcomes Collaborative (IROC) is a multi-center learning health network dedicated to improving health for children and young adults with kidney disease. We engage all stakeholders in sharing best practices and clinical data from every clinical encounter, supporting structured quality improvement at participating centers and throughout the network, and integrating research with clinical care. Centers commit site participation fees, data entry, and leadership. IROC provides information technology support, a registry with electronic data transfer from EHRs and UNOS, coaching in quality improvement, sharing learnings and best practices across centers, a patient/family work group, and access to data for research.
Results: Since 2016, 43 pediatric kidney transplant programs in the US have joined IROC accounting for > 60% of all children who received kidney allografts in the United States in 2022. To date, > 39,000 encounters have been entered into the IROC registry for 3,900 patients. Centers benefit from population management and visit planning tools that help them deliver care and manage long-term clinical outcomes for individual patients and the entire population. Direct engagement with patients allows for the co-production of educational and other materials to help patients manage their condition. Current efforts are focused on improving blood pressure control, reducing acute rejection, decreasing hospitalizations and “for cause” biopsies, and improving quality of life.
Conclusions: By developing a learning health system designed to learn from every patient across 43 centers, we have built the platform and infrastructure to improve health, longevity, and quality of life for children and young adults with kidney disease. Further information can be found at IROCnow.org.
- Natera, CareDx, Alnylam, Bioporto, National Kidney Fund, Travere Therapeutics.