Sind Erwachsene mit angeborenen Herzfehlern ausreichend versorgt?

The number of adults with congenital heart disease (CHD) in Germany is currently estimated to be approximately 280,000, which is higher than the number of children with CHD. Nearly all grown-ups with congenital heart defects (GUCH) have residual complaints and sequelae that require a life-long follow-up. It is estimated that more than 200,000 GUCH are not treated in a certified CHD center and not seen by a certified specialist. According to general experience, many physicians do not have specific knowledge concerning the problems of complex heart abnormalities and comorbidities. Moreover, current data show that even in anomalies which have long been considered as benign age-related problems may occur even despite surgical or interventional therapy early in life. The development of pulmonary arterial hypertension in primary left-right shunt anomalies is a typical example. An inadequate follow-up care in patients with CHD has negative effects on morbidity and mortality. Furthermore, the possibility of early preventive measures was probably not initiated in a timely manner. The main cardiac problems of GUCH are heart failure, cardiac arrhythmia, endocarditis and pulmonary vascular disease. With increasing age, additional problems concerning cardiac and non-cardiac comorbidities become increasingly more important. In GUCH therapy has to be adapted to the individual patient and cannot be transferred from treatment methods for acquired heart disease. When cardiac or non-cardiac problems arise, GUCH primarily contact a general practitioner. The primary caregivers are responsible for guiding patients along the appropriate way and to provide adequate treatment, which has to start as early as possible.