Abstract 18460: Post-Norwood Intensive Care Management and Patient Experience: Summary from the Joint Council for Congenital Heart Disease National Pediatric Cardiology Quality Improvement Collaborative Registry
Collaborative quality initiatives significantly improve care and outcomes in patients with chronic disease. One in four children with hypoplastic left heart syndrome (HLHS) die between the first and second palliative surgeries. As a result, the Joint Council for Congenital Heart Disease established a quality improvement collaborative to enhance interstage survival following the Norwood procedure. We report variations in post-surgical intensive care experience among the first 100 patients entered into the National Pediatric Cardiology Quality Improvement Collaborative registry (NPC-QIC). Using standardized data collection methods, we evaluated variation in the intensive care unit management of 100 infants born with HLHS. Patients were treated surgically at one of 21 different hospital based programs across the United States and entered the registry if discharged alive following the first stage palliation procedure between July 2008 and February 2010. The median duration of hospitalization in the intensive care unit following the initial palliative procedure was 11 days (IQR: 8, 20.5 days). Ninety-seven percent of patients received vasoactive and inotropic agents. Agents included milrinone (87%), dopamine (64%), and epinephrine (62%). Norepinephrine was used least commonly (1%). Reoperation was required for 19 patients. Four patients suffered cardiac arrest. Five patients required mechanical circulatory support for greater than 14 days. Twenty-one patients underwent cardiac catheterization, and of those, 15 (71%) required a catheter-based intervention. Eighty-one patients had post-operative arrhythmias, 63% of whom required treatment. As a component of the first national quality improvement effort in pediatric cardiology, the NPC-QIC registry provides data on the care and outcomes of infants during the initial palliative phase of HLHS. Our study summarizes differences in intensive care unit management of Norwood recipients and demonstrates relatively high rates of re-operation, post-surgical catheterization, and prolonged mechanical circulatory support. This study is an example of a data source that can provide important benchmark information for the ongoing care of infants with HLHS.
- © 2010 by American Heart Association, Inc.