The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) includes 61 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 disease is the largest in the world with more than 2,100 patients. NPCQIC highlights span improvement, innovation and discovery. Since July 2013, the mortality rate across centers participating in NPCQIC has decreased by 46 percent; we estimate this is approximately 50 lives saved or the equivalent of two classrooms of kindergartners. NPCQIC 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 NPCQIC 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. NPCQIC domain areas are comprised of the following learning structures: Fetal Perinatal, Surgical & ICU, Interstage, Neurodevelopmental, Nutrition and Growth, Transparency, Patient and Family Support.
Learn more about the National Pediatric Cardiology Quality Improvement Collaborative.