Introduction .– Very few comparative studies have yet reported health related quality of life (HRQoL) among children with congenital heart diseases (CHD).

Method .– We prospectively recruited children aged 8 to 18 with CHD (group 1, n = 282) and same age randomized control population selected among schools (group 2, n = 164). CHD were recruited in two tertiary care centers in France and Belgium. Thirty families refused to participate in group 1 and 150 in group 2. Primary outcome was the scoring for each dimension with Kidscreen-52 for children and Kidscreen-27 for parents (French version of the generic validated pediatric HRQoL questionnaire). Secondary outcomes were: severity class of CHD from 1 to 4 (from Uzark), cardiopulmonary exercise test (VO2 _max , anaerobic threshold, VE/VCO2 slope, oxygen uptake efficiency slope), and PedsQL scoring (non-validated HRQoL generic questionnaire, French and Belgium versions, self and parents reports).

Results .– Two hundred and eighty-two children with CHD (sex ratio 1.9 – mean age 12.3 ± 3) and 164 children in schools (sex-ratio 1.1 – mean age 12.8 ± 2.4) were recruited. Both centers were comparable for most demographic and clinical data. In most dimensions self-reported QoL scores among children with CHD were not different from control group, except for physical well-being (mean 46.5 ± 10.2 vs. 49.9 ± 8.6, P < 0.05). QoL in lower severity classes was not significantly different from controls. Children with severe CHD (class 4) had lower QoL in physical well-being (43.34 ± 9.64, P < 0.05). In group 1, parents’ reported QoL was lower than their children’s evaluation in several dimensions (physical, social, school). In control group, scores between self-reported and parents reported QoL were identical. Teenagers had higher QoL scores than younger children. Cardiopulmonary exercise test is well correlated to HRQoL, especially for well-being dimension.

Conclusion .– QoL among children with CHD is close to that of same age healthy children except for physical well-being. HRQoL for low severity CHD patients is similar to controls. QoL for severe CHD is the most impacted. Further studies should evaluate QoL evolution in time per patient.