Grown-up congenital heart disease: Continuum of care between pediatric and adults cardiologists in Reims University Hospital

Background Congenital heart disease (CHD) are seldom cured and the increasing grown-up congenital heart disease (GUCH) population still needs specialized follow-up that has to be organized. In Reims University Hospital, it's about 10 years ago that pediatric and adult cardiologists initiated a multidisciplinary clinic for follow-up of GUCH patients. Objectives The aim of the present study is to describe the GUCH population followed in our hospital (CHD, treatments, outcomes, complications, social issues) and the organization of their medical care. Methods This is a retrospective and observational study including patients with CHD which were over 18 years old in September 2013 and were seen in Reims University Hospital at least once between January 2008 and September 2013. Results Our GUCH population was 475 patients. Median age was 25.1 years old. Sex ratio was 0.82. Among CHD, univentricular hearts were 10%. Thirty-one percent of patients were taking cardiologic medications. Cardiac surgery had been performed in 62.1%. Interventional catheterization had been undertaken in 19.6%. Regarding the outcome, main complications were arrhythmias (17%), heart failure (5%), pulmonary hypertension (4%), endocarditis (1.2%), death (1.9%). Social supervision was needed in 14.3%. Twenty-six percent of patients had a life partner and 12.4% had children. During the period study, 11.7% of patients were lost to follow-up. Conclusions After reaching adulthood, patients with CHD need continuous follow-up because complications in GUCH patients are not uncommon. Although transition between adolescence and adulthood is supposed to be at high risk of breaking this follow-up, the present study shows that it is possible to minimize this event. We feel that an organized continuum of care between pediatric and adults cardiologists, as we settled in our hospital, could be an effective way to meet the special needs of GUCH patients.