title: Patient-reported quality of life outcomes for children with serious congenital heart defects.
abstract: OBJECTIVE
  To compare patient-reported, health-related quality of life (QoL) for children with serious congenital heart defects (CHDs) and unaffected classmates and to investigate the demographic and clinical factors influencing QoL.
  
  
  METHODS
  Retrospective cohort study.
  
  
  METHODS
  UK National Health Service.
  
  
  METHODS
  UK-wide cohort of children with serious CHDs aged 10-14 years requiring cardiac intervention in the first year of life in one of 17 UK paediatric cardiac surgical centres operating during 1992-1995. A comparison group of classmates of similar age and sex was recruited.
  
  
  METHODS
  Child self-report of health-related QoL scores (Pediatric Quality of Life Inventory, PedsQL) and parental report of schooling and social activities.
  
  
  RESULTS
  Questionnaires were completed by 477 children with CHDs (56% boys; mean age 12.1 (SD 1.0) years) and 464 classmates (55%; 12.0 (SD 1.1) years). Children with CHDs rated QoL significantly lower than classmates (CHDs: median 78.3 (IQR 65.0-88.6); classmates: 88.0 (80.2-94.6)) and scored lower on physical (CHDs: 84.4; classmates: 93.8; difference 9.4 (7.8 to 10.9)) and psychosocial functioning subscales (CHDs: 76.7, classmates: 85.0; difference 8.3 (6.0 to 10.6)). Cardiac interventions, school absence, regular medications and non-cardiac comorbidities were independently associated with reduced QoL. Participation in sport positively influenced QoL and was associated with higher psychosocial functioning scores.
  
  
  CONCLUSIONS
  Children with serious CHDs experience lower QoL than unaffected classmates. This appears related to the burden of clinical intervention rather than underlying cardiac diagnosis. Participation in sports activities is positively associated with increased emotional well-being. Child self-report measures of QoL would be a valuable addition to clinical outcome audit in this age group.
authors.affiliation: MRC Centre of Epidemiology for Child Health, Centre of Paediatric Epidemiology and Biostatistics, UCL Institute of Child Health, University College London, , London, UK.
authors.forename: Rachel L
authors.initials: RL
authors.lastname: Knowles
authors.forename: Thomas
authors.initials: T
authors.lastname: Day
authors.forename: Angie
authors.initials: A
authors.lastname: Wade
authors.forename: Catherine
authors.initials: C
authors.lastname: Bull
authors.forename: Christopher
authors.initials: C
authors.lastname: Wren
authors.forename: Carol
authors.initials: C
authors.lastname: Dezateux
mesh_terms: D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology*; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D006113:United Kingdom