title: Does the severity of congenital heart defects affect disease-specific health-related quality of life in children in Bosnia and Herzegovina?
abstract: The aim of this study was to assess whether the severity of congenital heart defects (CHD) affects disease-specific health-related quality of life (HRQOL) in children after open heart surgery. One hundred and fourteen children with CHD and one of their parents participated in the study. HRQOL was evaluated by the PedsQL 3.0 Cardiac Module. The children were assigned to one of three groups according to severity of CHD. Children with cyanotic CHD (Group 3) reported that their HRQOL on several domains was lower than that of children with anomalies with the left-right shunt and children with obstructive anomalies. Also, by parent proxy-report, patients with anomalies with the left-right shunt had statistically significant, better HRQOL scores for the heart problems and treatment scales, perceived physical appearance, treatment anxiety, cognitive problems, and communication scales in comparison to the children with cyanotic CHD. By self-report, children of Group 1 reported that they had statistically significant, better HRQOL in the heart problems and treatment scales compared with Group 2.
  
  
  CONCLUSIONS
  The results of the assessment by the PedsQL 3.0 Cardiac Module, a cardiac disease-specific instrument for children with CHD, indicate that HRQOL is poorest in children with complex CHD. Therefore, it is necessary to take the appropriate preventive measures for these patients, which include early (timely) cardiosurgical intervention and active psychological support to limit the negative impact of serious forms of CHD on the quality of life of these children.
authors.affiliation: Heart Center Sarajevo, Clinical Center, University of Sarajevo, Sarajevo, Bosnia and Herzegovina. elnur@epn.ba
authors.forename: Elnur
authors.initials: E
authors.lastname: Tahirović
authors.forename: Hidajeta
authors.initials: H
authors.lastname: Begić
authors.forename: Midhat
authors.initials: M
authors.lastname: Nurkić
authors.forename: Husref
authors.initials: H
authors.lastname: Tahirović
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
mesh_terms: D000293:Adolescent; D017522:Bosnia and Herzegovina; D002648:Child; D002675:Child, Preschool; D005260:Female; D006330:Heart Defects, Congenital / Q000503:physiopathology*; D006801:Humans; D008297:Male; D011788:Quality of Life; D012720:Severity of Illness Index