Aim: To measure quality of life in children with hypoplastic left heart syndrome and their families.
Methods: A questionnaire exploring socioeconomic status, structure and function of networks and psychological well-being was completed by the families of all 18 patients older than 2 years (age range 2.7–10.6). The results were compared with those of 180 healthy Swedish children matched for age and sex.
Results: There were no significant differences between the groups in any of the aspects of socioeconomic status. Study group parents had not more available time for their child (p < 0.05) and more separations/divorces (p < 0.01). The patients had lower self-esteem (p < 0.05), more psychosomatic symptoms (p < 0.001) and lower peer acceptance (p < 0.01) than control children.
Conclusion: With regard to psychological well-being, quality of life was significantly lower in children with hypoplastic left heart syndrome than in healthy controls.