Background: Grown-ups with congenital heart disease (GUCH) constitute an increasing population. Some of them reach adulthood without intervention and may present with symptoms, some require first intervention or re-operation for various reasons. Although interventions become more and more frequent in these patients, limited knowledge exists on their quality of life (QoL). The aim of the present study was to analyze QoL in GUCH patients who underwent cardiac surgery after the age of 14 years.
Design: A total of 296 patients with a mean age of 35+/-16 years (range 14-72 years) were operated on at our institution between July 1987 and December 2000, mainly for atrial septal defect (ASD), outflow tract lesion, Marfan syndrome and co-arctation. Early mortality was 3.4%. During follow-up QoL was assessed with the short form 36 health survey questionnaire (SF-36) and an additional questionnaire focused on medical and psychosocial aspects. Results were analyzed for the total collective and in relation to the underlying congenital heart disease (CHD).
Results: Quality of life was excellent and similar to an age- and gender-matched standard population, except in patients following repair of complete AV-canal. The main restrictions in this group were found in the emotional aspect (62.5+/-29.9) and physical role function (60.5+/-25.0) and reflected in limitations of daily activity.
Conclusion: Outcome and QoL in adolescents and adults with CHD is excellent and similar to that of an age- and gender-matched standard population. In the future special attention should be focused more strongly on medical follow-up and psychosocial problems in this increasing group of patients.