title: Functional Status and Quality of Life in Survivors of Extracorporeal Membrane Oxygenation After the Norwood Operation.
abstract: BACKGROUND
  Infants who require extracorporeal membrane oxygenation (ECMO) support after a Norwood operation are at increased risk for early and late death compared with patients who do not require ECMO post-Norwood. Little is known about the effect that ECMO post-Norwood has on functional status and quality of life among long-term survivors.
  
  
  METHODS
  We prospectively evaluated functional status and health-related quality of life in 12 surviving patients (cases) and 19 corresponding patients (controls) from a previous retrospective case-control assessment of long-term survival in patients requiring ECMO post-Norwood. Functional status was assessed with the Vineland Adaptive Behavior Scale-II, and health-related quality of life was assessed with the Pediatric Quality of Life Inventory (PedsQL) core and cardiac modules.
  
  
  RESULTS
  There were no differences in demographics, extracardiac or genetic anomalies, or age at follow-up assessment between ECMO cases and non-ECMO controls. The Vineland Adaptive Behavior Scale-II scores were comparable between groups, with both groups demonstrating function in the normal range in all four domains tested. The only difference in PedsQL scores between cases and controls was perceived physical appearance, which was lower among ECMO survivors by both patient and proxy report. PedsQL scores of both groups were comparable to published scores for patients with single-ventricle congenital heart disease but generally lower than scores for the healthy population.
  
  
  CONCLUSIONS
  The requirement for ECMO support after a Norwood operation does not appear to significantly affect functional status or quality of life among the subset of patients who achieve long-term survival.
authors.affiliation: Division of Pediatric Cardiology, University of Washington School of Medicine, Seattle Children's Hospital, Seattle, Washington. Electronic address: joshua.friedland-little@seattlechildrens.org.
authors.forename: Joshua M
authors.initials: JM
authors.lastname: Friedland-Little
authors.affiliation: Division of Pediatric Cardiology, Department of Pediatrics and Communicable Disease, University of Michigan, Ann Arbor, Michigan.
authors.forename: Karen
authors.initials: K
authors.lastname: Uzark
authors.affiliation: Division of Pediatric Cardiology, Department of Pediatrics and Communicable Disease, University of Michigan, Ann Arbor, Michigan.
authors.forename: Sunkyung
authors.initials: S
authors.lastname: Yu
authors.affiliation: Division of Pediatric Cardiology, Department of Pediatrics and Communicable Disease, University of Michigan, Ann Arbor, Michigan.
authors.forename: Ray
authors.initials: R
authors.lastname: Lowery
authors.affiliation: Division of Pediatric Cardiology, Department of Pediatrics and Communicable Disease, University of Michigan, Ann Arbor, Michigan.
authors.forename: Ranjit
authors.initials: R
authors.lastname: Aiyagari
authors.affiliation: Division of Pediatric Cardiology, Department of Pediatrics and Communicable Disease, University of Michigan, Ann Arbor, Michigan; Section of Pediatric Cardiac Surgery, Department of Cardiac Surgery, University of Michigan, Ann Arbor, Michigan.
authors.forename: Jennifer C
authors.initials: JC
authors.lastname: Hirsch-Romano
mesh_terms: D000203:Activities of Daily Living; D016022:Case-Control Studies; D002657:Child Development; D015199:Extracorporeal Membrane Oxygenation; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D009048:Motor Skills; D058327:Norwood Procedures; D011446:Prospective Studies; D011581:Psychological Tests; D011788:Quality of Life; D012951:Socialization; D017741:Survivors