INTERDISCIPLINARY OUTPATIENT-CLINIC FOR ADOLESCENTS AND ADULTS WITH CONGENITAL HEART-DISEASE - A 3-YEAR EXPERIENCE

Since September 1991, 204 patients (pts), 109 male and 95 female, mean age 27.3 +/- 10.6 years, were followed in a newly established interdi sciplinary outpatient clinic combining both adult and pediatric cardio logists. 61 pts predominantly presented with left-to-right shunt conge nital heart disease (CHD), 32 with valvar CHD, 20 with aortic coarctat ion, 23 with complex acyanotic, and 49 with cyanotic CHD. The populati on included 19 pts with Marfan syndrome. 106 pts had had previous card iac surgery, 32 of them with Lip to three reoperations. Deficits and n eeds in medical and social cafe were analyzed in 100 pts using a stand ardized questionnaire at the time of first examination: One-third of p ts were not or only incompletely informed about their CHD, previous su rgical 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 catheteriza tion was performed in 37 pts (18%) after being first seen in our outpa tient clinic, followed by a primary surgical intervention in 19 and re operation in eight cases. Overall, 30 pts (15%) underwent surgery (28) or interventional procedures (one closure of the arterial duct, one A V 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. Eb stein, thrombosis of the mechanical prosthesis). The population includ es five pts with severe pulmonary vascular disease (one waiting for lu ng transplantation) and two pts with pulmonary artery arborisation mal formations 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 ne cessary invasive investigations (18%) and surgical or interventional p rocedures (15%). Interdisciplinary management of these patients is man datory combining the special facilities of adult acid pediatric cardio logists.