The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) includes over 65 pediatric cardiology centers that care for children with complex congenital heart disease and a strong partnership with Sisters-by-Heart, a parent advocacy group. The registry of infants with hypoplastic left heart syndrome (HLHS) is the largest in the world with more than 2,100 patients. NPC-QIC highlights span improvement, innovation and discovery. Since July 2013, the mortality rate across centers participating in NPC-QIC has decreased by 44 percent; it’s estimated this is approximately 50 lives saved or the equivalent of two classrooms of kindergartners. NPC-QIC has developed a bundle (or set of changes) that has improved growth outcomes in infants prior to their second open-heart surgery.
In 2016, phase II launched, expanding the scope of NPC-QIC improvement and research efforts from the “interstage” period (between discharge from the initial open-heart surgery and admission for a bi-directional Glenn procedure) to the interval between diagnosis and celebration of the first birthday for HLHS patients. The aim of phase II is to improve outcomes between diagnosis and first birthday. NPC-QIC domain areas are comprised of the following learning structures: Fetal Perinatal, Surgical & ICU, Interstage, Neurodevelopmental, Nutrition and Growth, Patient and Family Support.
At the NPC-QIC Learning Session in fall 2016, one of the plenary sessions highlighted “the paradox of Fontan circulation.” After that session, interest in expanding NPC-QIC’s focus to individuals with Fontan circulation began and NPC-QIC/SBH leadership has been instrumental in bringing together a group of clinicians, parents and patients to begin to design what is called “the Fontan Outcomes Network.” The design work is underway in the three focus areas for the Fontan Outcomes Network (FON): 1) Physical Health and Functioning, 2) Neurodevelopment and 3) Emotional Health and Resiliency (Family CaRes). Expected to launch in 2020, this network will be organized using the same collaborative principles developed and refined in the last decade of work.
In May 2017, NPC-QIC leadership brought together leaders from a number of other congenital heart networks to begin discussions about collaboration among these groups. Because of the success NPC-QIC has demonstrated, several other groups have initiated similar registries and networks in NPC-QIC’s field. The next version of learning networks in pediatric cardiology, encompassing improvement and research based on a partnership among patients, families, clinicians and researchers, needs to be based on cooperation and collaboration among the various emerging collaborations. The result of these talks has been the development of Cardiac Networks United (CNU). This level of collaboration will transform the way we approach improving outcomes in the field of pediatric and congenital heart disease. Cardiac Networks United held its inaugural meeting in November 2019 and several of the participating learning networks hosted their Learning Sessions during the same week in nearby locations.
Learn more about the National Pediatric Cardiology Quality Improvement Collaborative and Cardiac Networks United.