title: Health-related quality of life in children with surgery for CHD: a study from the Swedish National Registry for Congenital Heart Disease.
abstract: BACKGROUND
  As survival of children with CHD needing surgery has improved significantly, the need for follow-up in terms of health-related quality of life has become increasingly important. In this study, we sought to describe health-related quality of life in children with CHD in relation to cardiac surgery.
  
  
  METHODS
  A retrospective Swedish National Registry for Congenital Heart Disease survey measured using DISABKIDS chronic generic measure-short version included 337 children (age 9-17 years; 39% girls). The majority (n=319, 95%) of children had a biventricular heart, whereas the remaining had a univentricular heart. Cardiac surgery was performed in 197 (58%) children. Health-related quality of life was expressed as total score (100 highest) and given as medians and 10-90th percentiles.
  
  
  RESULTS
  The overall total score was 95 (88-100). Children with a biventricular heart who had undergone three or more surgeries (n=31; 9%) had the lowest total score of 81 (61-97; p<0.001). Children with two or more surgeries and those with univentricular heart were classified in NYHA II more frequently than children with one or no cardiac surgery (p=0.005 and <0.001, respectively). Children with three or more surgeries and those with univentricular heart needed more help at school (p<0.001). Compared with children with other chronic diseases, children with CHD had a high total score except for children with three or more surgeries who had comparable total scores with children with other chronic diseases.
  
  
  CONCLUSIONS
  Children with three or more cardiac surgeries and those with a univentricular heart appear to have lower health-related quality of life, cognitive ability, and NYHA classification.
authors.affiliation: 1Department of Cardiology,Pediatric Heart Center,Skåne University Hospital,Lund,Sweden.
authors.forename: Birgitta
authors.initials: B
authors.lastname: Svensson
authors.affiliation: 2Department of Care and Science, Faculty of Health and Society,Malmö University,Malmö,Sweden.
authors.forename: Ewa
authors.initials: E
authors.lastname: Idvall
authors.affiliation: 3Research and Development Centre,Medical Statistics and Epidemiology,Skåne University Hospital,Lund,Sweden.
authors.forename: Fredrik
authors.initials: F
authors.lastname: Nilsson
authors.affiliation: 1Department of Cardiology,Pediatric Heart Center,Skåne University Hospital,Lund,Sweden.
authors.forename: Petru
authors.initials: P
authors.lastname: Liuba
mesh_terms: D000293:Adolescent; D006348:Cardiac Surgical Procedures; D002648:Child; D005260:Female; D006304:Health Status; D006330:Heart Defects, Congenital / Q000453:epidemiology / Q000523:psychology / Q000601:surgery*; D006801:Humans; D015994:Incidence; D008297:Male; D011788:Quality of Life; D012042:Registries; D012189:Retrospective Studies; D012307:Risk Factors; D011795:Surveys and Questionnaires; D013548:Sweden / Q000453:epidemiology
keywords: CHD; Health-related quality of life; children; registry study