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Background Atrial Septal Defect (ASD) is considered one of the most benign defects among congenital heart disease. The very good short and midterm outcomes after closure in the recent decades has led to believe that the ASD population is almost comparable to the background population after treatment. However, recent studies indicate that these patients are much more affected by their disease than first assumed. In this nationwide cohort study, we report the first long-term follow-up of use of permanent social security benefits and work participation in adults with ASD. Methods All Danish patients born before 1994 and diagnosed with ASD between 1959-2013 (n = 2,277) were identified from the Danish registries. A comparison cohort was created using the Danish Civil Registration System, matching every verified ASD patient with 10 persons from the general population on gender and birth year. We used Cox proportional hazards regression to compare the risk of receiving permanent social security benefits in the ASD patients compared with the matched cohort. Using the DREAM database we calculated the proportion of patients and controls not working at the age of 30 years. Results ASD patients had a higher risk of receiving permanent social security benefits (hazard ratio 2.3 (95% confidence interval 2.1-2.6)) compared with the comparison cohort; 24% of the ASD patients was receiving permanent social security benefits at the end of follow up compared with 12% of the comparison cohort. At the age of 30 years, the proportion not working was 28% in the ASD cohort and 18% in the comparison cohort. Of patients not working 23% had a psychiatric diagnose compared to 6.8% of the controls. Conclusions The risk of receiving permanent social security benefits was twice as high in patients with ASD and the work participation was reduced compared with the background population. Key messages The poor affiliation to the work force and high prevalence of psychiatric morbidity is worrying. It demands for an increased psychosocial support by professionals caring for patients with ASD.

Socioeconomic consequences for adults with atrial septal defect: A register based follow-up study