Betreuungskonzept für die Schweiz

The improved survival of children with complex congenital heart defects (CHD) into adulthood and the expansion of the population of adults are the result of great advances in medicine including congenital heart disease surgery, anesthesiology, intensive care and diagnostic imaging during the last 50 years. The population of adults with CHD is heterogeneous due to the introduction of different types of repair and their modification during the last decades. However, most of them are left with residua and sequelae. Their congenital heart defects are repaired and not fixed: these patients are not cured. There is an estimate of approximately 20 000 adults with CHD in Switzerland, 11 000 of them are at moderate or high risk for reinterventions (ie conduit failure), arrhythmias, endocarditis, heart failure, or premature death. The discrepancy is obvious between the available resources and the increasing needs for delivery of appropriate care to adults with CHD. Adult health care systems are challenged worldwide: they are not prepared to deliver high quality care to the ever increasing number of complex patients because the increasing needs for structural and personnel resources have been neglected for many years. There is a lack of expert caregivers. General education and training in cardiology does not cover the knowledge and expertise required to provide specialised care to adults with CHD: the anatomy, morphology, pathophysiology and the surgical procedures are complex. Many pediatric cardiologists have become increasingly involved with adults with CHD as their pediatric patients have aged. Pediatric cardiologists are trained in CHD, however, they do not have enough or no experience or training in comprehensive adult care, eg acquired disease, reproductive medicine, etc. Most units rely on an extended role for pediatric cardiologists who work in conjunction with “interested” adult cardiologist. There is an urgent need to improve this situation by implementing educational requirements. There are three levels of caregivers. Primary caregivers or cardiologists without additional training and exposure to congenital heart disease provide level 1 care. Caregivers on level 2 are cardiologists with a “real interest” in congenital heart disease. In addition to their normal training, they spend the equivalent of 6 months of full-training in a specialist centre, they attend >20 outpatient clinics at a specialist centre over a period of 2 years and maintain their skills by direct association with a supraregional or specialist centre. Cardiologists with a level 2 training are working in regional adult congenital heart disease clinics, they serve for a population up to 2 million and they will be the backbone for the provision of care to the growing population. Specialist cardiologists with level 3 training may come from pediatric cardiology or adult cardiology. Both of them require at least a 12 to 18 month training in a high volume specialist centre (supraregional referral centre) for adults with CHD; adult cardiologists with a level 3 training should have an additional year of pediatric training in a centre with active congenital surgical and interventional program. Patient care, education and research are the three pillars of a supraregional referral centre which serves for a population between 3 and 10 million, which is fully equipped and which provides high volume care to maintain skills and expertise of both the cardiologists and congenital heart surgeons. Amultidisciplinary team approach in patient care, education and research is fundamental to achieving high standard and covering the wide and spectrum of complex co-morbidities in adults with CHD. A close collaboration (networking) among the 3 level of care is crucial. Importantly, a close integrated collaboration with the pediatric cardiologists is fundamental. The provision of care is based on the level of training. Patients at low risk (simple defects without major residua/sequelae) can be followed by a cardiologist providing care on level 1. Patients at moderate or high risk should be followed by a cardiologist with a level 2 or 3 training. Congenital heart disease is a chronic disease from fetal life until adulthood. Education of the professionals, of the patients and of the public is the key to truly extend the outstanding results of pediatric cardiology and congenital heart surgery into adulthood. It is our ethical responsibility to provide the same quality of care as we do to patients with acquired cardiovascular diseases. We must validate the investment made in children with CHD. We provide excellent care to children with CHD – we don’t want them to be second class citizens when entering the adult health care system.