title: Quality of life of Malaysian children with CHD.
abstract: OBJECTIVE
  The objectives of this study were to compare the quality-of-life scores of Malaysian children with CHD and their healthy siblings, to determine the level of agreement between proxy-reports and child self-reports, and to examine variables that have an impact on quality of life in those with CHD.
  
  
  METHODS
  Parental-proxy scores of the Pediatric Quality of Life Inventory 4.0 core scales were obtained for 179 children with CHD and 172 siblings. Intra-class coefficients were derived to determine the levels of proxy-child agreement in 66 children aged 8-18 years. Multiple regression analysis was used to determine factors that impacted Pediatric Quality of Life Inventory scores.
  
  
  RESULTS
  Proxy scores were lower in children with CHD than siblings for all scales except physical health. Maximum differences were noted in children aged 5-7 years, whereas there were no significant differences in the 2-4 and 13-18 years age groups. Good levels of proxy-child agreement were found in children aged 8-12 years for total, psychosocial health, social, and school functioning scales (correlation coefficients 0.7-0.8). In children aged 13-18 years, the level of agreement was poor to fair for emotional and social functioning. The need for future surgery and severity of symptoms were associated with lower scores.
  
  
  CONCLUSIONS
  Differences in proxy perception of quality of life appear to be age related. The level of proxy-child agreement was higher compared with other reported studies, with lower levels of agreement in teenagers. Facilitating access to surgery and optimising control of symptoms may improve quality of life in this group of children.
authors.affiliation: Department of Paediatrics, Faculty of Medicine,University of Malaya,50603 Kuala Lumpur,Malaysia.
authors.forename: Lai C
authors.initials: LC
authors.lastname: Ong
authors.affiliation: Department of Paediatrics, Faculty of Medicine,University of Malaya,50603 Kuala Lumpur,Malaysia.
authors.forename: Ching S
authors.initials: CS
authors.lastname: Teh
authors.affiliation: Department of Paediatrics, Faculty of Medicine,University of Malaya,50603 Kuala Lumpur,Malaysia.
authors.forename: Joyce
authors.initials: J
authors.lastname: Darshinee
authors.affiliation: Department of Paediatrics, Faculty of Medicine,University of Malaya,50603 Kuala Lumpur,Malaysia.
authors.forename: Asma
authors.initials: A
authors.lastname: Omar
authors.affiliation: Department of Paediatrics, Faculty of Medicine,University of Malaya,50603 Kuala Lumpur,Malaysia.
authors.forename: Hak L
authors.initials: HL
authors.lastname: Ang
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000503:physiopathology / Q000523:psychology*; D006801:Humans; D008296:Malaysia; D008297:Male; D015999:Multivariate Analysis; D010290:Parents; D019727:Proxy; D011594:Psychometrics / Q000379:methods; D011788:Quality of Life; D012044:Regression Analysis; D057566:Self Report; D012647:Self-Assessment; D035781:Siblings
keywords: CHD; Quality of life; children