title: Variation in interstage outpatient care after the Norwood procedure: a report from the Joint Council on Congenital Heart Disease National Quality Improvement Collaborative.
abstract: 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.
  
  
  METHODS
  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.
authors.affiliation: Department of Cardiology, Children's Hospital Boston, 300 Longwood Ave, Boston, MA 02115, USA. david.schidlow@cardio.chboston.org
authors.forename: David N
authors.initials: DN
authors.lastname: Schidlow
authors.forename: Jeffrey B
authors.initials: JB
authors.lastname: Anderson
authors.forename: Thomas S
authors.initials: TS
authors.lastname: Klitzner
authors.forename: Robert H
authors.initials: RH
authors.lastname: Beekman
authors.forename: Kathy J
authors.initials: KJ
authors.lastname: Jenkins
authors.forename: John D
authors.initials: JD
authors.lastname: Kugler
authors.forename: Gerard R
authors.initials: GR
authors.lastname: Martin
authors.forename: Steven R
authors.initials: SR
authors.lastname: Neish
authors.forename: Geoffrey L
authors.initials: GL
authors.lastname: Rosenthal
authors.forename: Carole
authors.initials: C
authors.lastname: Lannon
mesh_terms: D026683:Advisory Committees / Q000458:organization & administration / Q000592:standards*; D000553:Ambulatory Care / Q000458:organization & administration / Q000592:standards; D001835:Body Weight; D002309:Cardiology / Q000458:organization & administration / Q000592:standards*; D057189:Checklist; D003266:Continuity of Patient Care / Q000592:standards; D003299:Cooperative Behavior; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration / Q000592:standards*; D019317:Evidence-Based Medicine / Q000592:standards; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000601:surgery*; D006699:Home Care Services / Q000592:standards; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D033183:Interdisciplinary Communication; D008297:Male; D058327:Norwood Procedures; D018529:Nutritional Support / Q000592:standards; D009937:Organizational Objectives; D010092:Oximetry / Q000592:standards; D010348:Patient Care Team / Q000592:standards; D010351:Patient Discharge / Q000592:standards; D017410:Practice Guidelines as Topic / Q000592:standards; D011320:Primary Health Care / Q000592:standards; D058996:Quality Improvement / Q000458:organization & administration / Q000592:standards*; D012042:Registries; D012955:Societies, Medical / Q000458:organization & administration / Q000592:standards*; D016896:Treatment Outcome; D014481:United States