[Organizational and medical aspects of transition of juveniles with congenital heart defects to adult cardiology care].

A growing, heterogeneous group of children with congenital heart disease is surviving into adulthood due to advances in medicine. These patients including those with simple and complex congenital heart disease and operated on during childhood are facing long-term complications. Superspecialist care and expertise are required during their life to deal with their unique problems the most common being ventricular failure, arrhythmias, valve and conduit longevity. Teenagers and adolescents disappear from both medical and parental care because of the lack of transition programs. Transition of care from pediatric to adult cardiologists must be organized in each country and must reflect regional history, regional politics and realities. Transition of care requires goodwill from parents, adolescents, pediatric and adult cardiologists. Transition clinics being held jointly by pediatric and adult cardiologists between the age of 16 and 18 years are essential to encourage the adolescents to take charge of their own life and health issues. Adequate information about their heart defect, their operations and their residual lesions may help them understand the implications for the future and improve their compliance. A transition program must include counseling on education, career, endocarditis prophylaxis, insurance and lifestyle issues such as sexuality and reproduction (including anticonception, pregnancy), cardiovascular risk factors and sports activities. Medical reports including operative reports and heart catheterization reports must be transferred to the adult cardiologists. In Switzerland, care of adults with congenital heart disease is based on three levels: 1) primary caregivers including general practiioners, internists and community cardiologists; 2) cardiologists with special commitment and expertise to patients with congenital heart disease who organize regional outpatient clinics; 3) supraregional referral centers with cardiologists trained in pediatric and adult congenital heart disease and experienced in the special needs, problems and management of this unique population. A close collaboration between pediatric and adult cardiologists participating jointly in the care of congenital heart disease patients is very important. An interdisciplinary team offers all non-invasive and invasive facilities for diagnostic and therapeutic procedures in a supraregional referral center. A close collaboration among all physicians is crucial for optimal care and management. Integration of adolescents with congenital heart disease into an adult medical system improves both compliance and quality of care and supports the patient's esteem because many medical aspects and lifestyle issues are completely different from those during childhood.