Health related quality of life in children with congenital heart disease

Health-related quality of life in children with congenital heart disease (CHD) was compared to that of healthy children. Furthermore, agreement between child and parent reports was examined. In addition, differences in quality of life related to the severity of CHD were evaluated. One hundred children with CHD aged between 8-18 years and their parents answered a health-related quality of life-questionnaire during their visit to the paediatric cardiology outpatient department. CHD children reported reduced motor functioning and autonomy compared to healthy children. Parents of children with CHD reported their children to have a reduced quality of life in the domains of: motor functioning, autonomy and cognitive functioning. Agreement between child and parent reports was moderate. Children systematically reported lower health related quality of life on the domain of positive emotions than did parents. Health related quality of life in children with CHD appeared not to be influenced by severity of the disease. In conclusion, regardless of the severity of the disease, children with CHD reported their health related quality of life on several domains to be lower than that of healthy children. This means that on several domains, the emotional impact of problems in health status is greater for children with CHD than for healthy children. When CHD patients visit the clinic, it is important that physicians actively ask patients as well as parents about the child's motor functioning, autonomy and cognitive functioning. Children with problems in these domains can then be identified, and psychological interventions can take place at an early stage.