Although interventions to improve outcomes for children with congenital heart disease may be designed and tested, the rarity of any one specific defect presents a barrier to using traditional statistical methods to measure the effects of these interventions. The purpose of this report is to describe the innovative statistical approach taken by the Joint Council on Congenital Heart Disease (JCCHD) National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) to measure outcomes for infants with hypoplastic left heart syndrome—a relatively rare disease. We report our experience with the application of statistical process control methods to generate measures capable of identifying statistically significant change in the incidence of early growth failure—a clinically important outcome in this relatively small patient population.
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