The estimated number of patients with adult congenital heart defects in Norway

An increasing survival rate for adult patients with congenital heart defects has been related to increased hospitalization and a greater risk of incidences during physical activity. The limited follow-up of these adult patients is partly due to a lack of knowledge about the number of adult patients in need of specialized care. Based on a classification into simple, moderate and severe forms of congenital heart defect, the population size was estimated for three age categories. Based on a conservative prevalence at birth of 7.0 per 1000 live births, approximately 14 000 adult patients with congenital heart defects between 16 and 64 years are alive in Norway today and in need of specialized cardiology attention. This is almost twice the number of children with a congenital heart defect. The assessment of the number of patients is important in order to reveal the risks of fatal incidence during physical activity in the adult congenital heart disease group. There is a need for knowledge and education about the potential risks during sports in coaches, teachers, health personnel, employers, parents, caretakers and in the patients themselves.