THE ADOLESCENT AND THE YOUNG ADULT WITH CONGENITAL HEART DISEASE

Key words: Congenital heart disease, Adolescence, Follow-up care

The article addresses the needs and problems of grown-up congenital heart (GUCH) patients. The size of GUCH population is uncertain, but since 80-85% of patients born with congenital heart disease (CHD) now survive to adulthood (age 16 years), an annual increase can be anticipated, according to birth rate. Not all GUCH patients require the same level of expertise: 20-25% are complex, or rare and require life-long expert supervision and trained staff; a further 35-40% require access to expert consultation. The remaining 40% have simple or cured diseases and need little or no specialist expertise. Prenatal diagnosis and option for termination of pregnancy in the future could have an impact on the number of serious CHD disease patients. Some specific problems in the GUCH population are: ventricular dysfunction, arrhythmias, contraception and pregnancy, infective endocarditis, non cardiac surgery, intervention by catheter or cardiac surgery. Autopsy is also most important. Transition of care from paediatric to adult supervision should be flexibly managed and explained to the patient and the family. Level of care required should be explained to the family: it may be none, occasional, or fully specialist supervision. Easy access to specialised care and support with lifestyle and social problems should be assured. All patients should be entered into a local data base and a national registry allowing the dissemination of informations on special needs.