Quality of life and specific problems after cardiac surgery in adolescents and adults with congenital heart disease

Objectives: Grown-ups with congenital heart diseases (GUCH) are an increasing group of patients. Although operations in GUCH patients become more and more frequent today, limited knowledge exists on their quality of life and heart related specific problems, such as arrhythmias, medical follow-up and pregnancy. Aim of the present study was to analyze follow-up and quality of life (QoL) in GUCH patients who underwent cardiac surgery after the age of 14 years.

Methods: 296 patients (35±16 y) were operated at our institution between 07/87 and 12/00. Early mortality was 3.4%. The initial cardiovascular pathology and the indications for surgery were assessed. Main cause of surgery are ASD, outflow tract lesions, Marfan syndrome and coarctation. In all the survivors a follow-up was performed. QoL was assessed with the short form 36 health survey questionnaire (SF-36) and analyzed in relation to the underlying CHD.

Results: Except in patients with AV-Defect QoL was excellent and similar to an age- and gender matched standard population. Main restrictions in this group were found in the aspect emotional (62.5±29.9) and physical role function (60.5±25.0), which are reflected in a limitation of daily activity. Further problems were reported in the medical follow-up, as well as during pregnancy, especially in patients suffering from Tetralogy of Fallot or TGA.

Conclusion: Outcome and QoL in adolescents and adults with CHD is excellent and similar with an age- and gender matched standard population. We have to focus even more on medical follow-up and psychosocial problems in this increasing group of patients.