Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect

Follow-up studies on patients operated on for congenital heart defects have shown good anatomical results and long-term survival. To date, there have been few studies on such patients with regard to long-term psychosocial out come and quality of life. In this study, two cohorts of patients operated o n before the age of 15 years, one for tetralogy of Fallot (TOF) and the oth er for atrial septal defect (ASD), were investigated 20 and 30 years after operation regarding quality of life. The combined cohort had a higher educa tional level than average. There was no connection between quality of life and physical health as judged from the New York Heart Association classific ation. The TOF group rated their quality of life higher than the ASD group, but both groups had lower figures at the 30-year than at the 20-year follo w-up. Fewer patients in the TOF than in the ASD group considered that their lives were affected by the heart disease. It is concluded that the severit y of the heart disease is not necessarily congruent with estimated quality of live and that mild heart defects, such as ASD, can have a considerable i mpact on later life quality. Surprisingly few TOF patients were affected ne gatively, a finding which might reflect development of a specific coping st rategy in these patients during childhood.