Summary

Adults with congenital heart disease (CHD) are a growing disease population with very specific needs that will represent a major health issue. Although most of them had surgery before, CHD patients are rather palliated than cured and life-long surveillance is necessary for early detection of residual defects and potential late complications. Despite the fact that survival dramatically improved, this patient population still needs to deal with increased mortality mainly related to heart failure, sudden death and perioperative mortality. CHD is considered as a new subspecialty of Cardiology and appropriate care should be concentrated in Grown Up with Congenital Heart disease (GUCH) expert centres. Patients should be surrounded by a team of care givers (including specialist nurses, CHD surgeons, CHD imaging specialists, interventional cardiologists, electrophysiologists and psychosocial assistants) lead and coordinated by a fully trained CHD Cardiologist. A GUCH unit can only function in a multidisciplinary setting in which collaboration with the entire spectrum of Adult Medicine, General Cardiology, Heart Transplant and Palliative Care is necessary. Furthermore, pre-pregnancy counselling, care of pregnancy and delivery should be in close collaboration with the Department of Obstetrics and Gynaecology.

In Antwerp, an expert GUCH centre is still lacking. Estimates indicate a target population in Antwerp of at least 5866 patients. Currently these patients are spread among different care givers and many of them are lost to follow up. A well-defined and high-quality expert centre is essential to provide appropriate care to further improve quality of care, survival and quality of life of this vulnerable patient population. At the Antwerp University Hospital we are currently starting up an expert centre, following a step by step approach according to high standard international recommendations. In addition, as active research participation is considered a cornerstone of a successful GUCH unit, we will use our expertise in heart failure and cardiac rehabilitation to set up a combined endurance resistance training program, for the first time in CHD patients. One of the determining factors of quality of life is the ability to perform daily life activities. These activities are performed at submaximal capacity and require skeletal muscle mass and strength. Exercise capacity in CHD patients is clearly lower compared to patients with healthy hearts. Moreover, peak oxygen consumption is to a same extent depressed as in heart failure patients, and is multifactorial. Our centre has demonstrated that heart failure patients clearly benefit from combined endurance - resistance exercise training. Our research project will investigate the effects of combined endurance - resistance training to maximal and submaximal exercise capacity in a setting of a cardiac in-hospital rehabilitation program. We are convinced that the Viviane Conraads price will support us in our aim to further improve care and quality of life of these patients.