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 p eriod 1982-91 (n = 22810), using essential rife spheres: external livi ng 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 dimensio ns of these quality of life spheres. Three subgroups of CHDs were inve stigated: CHDs spontaneously cured (n = 80), CHDs treated by surgery ( n = 56), and CHDs with associated syndromes/malformations (n = 29). 30 1 (75%) out of 400 controls, matched for age and habitat (county), ans wered the same questionnaire. The children's ages at investigation wer e 2 y 2 months-12 y 2 months (median 6 y 1 month). There were no stati stically significant differences between the CHD groups and the contro ls for overall quality of life for any of the three life spheres (p > 0.05). In children with operated CHDs and CHDs associated with syndrom es/malformations, quality of life was influenced at some aspects of th e external as well as at the interpersonal and personal levels. A tren d 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 tha t this may represent development of coping mechanisms and recalibratio n of values of life.