Quality of life in children with congenital heart defects

Quality of life was measured in children with congenital heart defects (CHDs) registered in a total population of infants born live in the period 1982-91 (n = 22810), using essential life spheres: external living conditions, interpersonal and personal conditions. In 200 children with CHD alive at the time the investigation was performed, 164 (82%) of the families answered a questionnaire addressing different dimensions of these quality of life spheres. Three subgroups of CHDs were investigated: CHDs spontaneously cured (n = 80), CHDs treated by surgery (n = 56), and CHDs with associated syndromes/ malformations (n = 29). 301 (75%) out of 400 controls, matched for age and habitat (county), answered the same questionnaire. The children's ages at investigation were 2 y 2 months-12 y 2 months (median 6 y I month). There were no statistically significant differences between the CHD groups and the controls for overall quality of life for any of the three life spheres ( p > 0.05). In children with operated CHDs and CHDs associated with syndromes/malformations, quality of life was influenced at some aspects of the external as well as at the interpersonal and personal levels. A trend existed for a higher subjective experience of quality of life in the total CHD group as well as in all the subgroups. It is speculated that this may represent development of coping mechanisms and recalibration of values of life.