QUALITY OF LIFE IN CHILDREN WITH CONGENITAL HEART DISEASE

Krol Y., Grootenhius M.A., Destre-Vonk A., Lubbers L.J., Koopman H.M. & Last B.F.
Emma Children's Hospital/Accademy Medical Centre, University of Amsterdam, Holland.

Health-related quality of life in children with congenitai heart disease (CHD) was compared to that of healthy children. In addition, differences in quality of life related to the severity of CHD were evaluated. 100 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. The quality of life of children with CHD was negatively influenced on several levels according to the self-evaluation and the parental evaluations. Differences were small but clinically relevant. 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: pain and symptoms, motor functioning, autonomy and cognitive functioning. 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 to be less than that of healthy children. This means that the emotional impact of problems in health status is greater for children with CHD than for healthy children. Considering this, when CHD patients visit the clinic, it is important that physicians actively ask patients (and parents) about their emotionai status. That way, children with CHD at risk for emotional problems can be identified, and interventions can take place at an early stage.

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