Variation in Interstage Outpatient Care after the Norwood Procedure: A Report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative
Article first published online: 23 MAR 2011
© 2011 Copyright the Authors. Congenital Heart Disease © 2011 Wiley Periodicals, Inc.
Congenital Heart Disease
Volume 6, Issue 2, pages 98–107, March/April 2011
How to Cite
Schidlow, D. N., Anderson, J. B., Klitzner, T. S., Beekman III, R. H., Jenkins, K. J., Kugler, J. D., Martin, G. R., Neish, S. R., Rosenthal, G. L., Lannon, C. and For the JCCHD National Pediatric Cardiology Quality Improvement Collaborative (2011), Variation in Interstage Outpatient Care after the Norwood Procedure: A Report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative. Congenital Heart Disease, 6: 98–107. doi: 10.1111/j.1747-0803.2011.00509.x
- Issue published online: 23 MAR 2011
- Article first published online: 23 MAR 2011
- Accepted in final form: January 16, 2011.
- Congenital Heart Disease;
- Quality Improvement
Objective. The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is the first quality improvement collaborative in pediatric cardiology, and its registry captures information on interstage care and outcomes of infants after the Norwood procedure. The purpose of this study was to evaluate variation in interstage outpatient clinical care practices for infants discharged home after the Norwood procedure.
Design. Data for the first 100 infants enrolled in the NPC-QIC registry were evaluated. The care domains assessed for variation included: (1) discharge communication with outpatient cardiologist and primary care physician (PCP); (2) nutrition plan at hospital discharge; and (3) planned use of home surveillance strategies.
Results. One hundred infants were discharged home between July 2008 and February 2010, from 21 participating US pediatric cardiac programs. Median age at discharge was 29 (11–188) days. Interstage outpatient care was provided at the Norwood center for 62 infants, at other centers for 25, and at a combination of centers for 13. Complete discharge communication (defined as written communication of medication list, nutrition plan, and red flag checklist) was relayed to only 45 outpatient cardiologists and to 26 PCPs. Nutrition route at discharge was exclusively oral in 49, combined oral and nasogastric (NG)/nasojejunal (NJ) in 38, exclusively NG/NJ in six, combined oral and gastrostomy tube (GT) in six, and exclusively GT in one infant. Home surveillance strategies were utilized for 81 infants (oximetry and weight monitoring in 77, oximetry alone in four), with no home surveillance in 19 infants.
Conclusions. Considerable variation exists in interstage outpatient care after the Norwood procedure in the care domains of discharge communication, nutrition, and home surveillance. Standardizing care around evidence-based practices may improve the outcomes for these very high-risk children.