[The management of adolescents and adults with congenital heart defects: 3 years experiences with interdisciplinary consultation].

UNLABELLED

Since September 1991, 204 patients (pts), 109 male and 95 female, mean age 27.3 +/- 10.6 years, were followed in a newly established interdisciplinary outpatient clinic combining both adult and pediatric cardiologists. 61 pts predominantly presented with left-to-right shunt congenital heart disease (CHD), 32 with valvar CHD, 20 with aortic coarctation, 23 with complex acyanotic, and 49 with cyanotic CHD. The population included 19 pts with Marfan syndrome. 106 pts had had previous cardiac surgery, 32 of them with up to three reoperations. Deficits and needs in medical and social care were analyzed in 100 pts using a standardized questionnaire at the time of first examination: One-third of pts were not or only incompletely informed about their CHD, previous surgical procedures and need for antibiotic prophylaxis of endocarditis. Only a minority of pts had had vocational advice (34%) or counseling concerning contraception (40%) or pregnancy (30%). Cardiac catheterization was performed in 37 pts (18%) after being first seen in our outpatient clinic, followed by a primary surgical intervention in 19 and reoperation in eight cases. Overall, 30 pts (15%) underwent surgery (28) or interventional procedures (one closure of the arterial duct, one AV node ablation after Mustard-operation) as a consequence of admission to our unit. Successful late Fontan operations were performed in four adults aged 21 to 35 years. There was 1/30 postoperative death (M. Ebstein, thrombosis of the mechanical prosthesis). The population includes five pts with severe pulmonary vascular disease (one waiting for lung transplantation) and two pts with pulmonary artery arborisation malformations not amenable to surgery.

CONCLUSION

In a population of 204 adolescents and adults with CHD, we clearly found deficits in medical and social care and, in addition, an unexpected high percentage of necessary invasive investigations (18%) and surgical or interventional procedures (15%). Interdisciplinary management of these patients is mandatory combining the special facilities of adult and pediatric cardiologists.