Guidelines

Congenital heart defects are relatively rare. Randomized multicentric studies, as for acquired heart diseases, have not been carried out. So far there are only the “Guidelines for diagnosis and therapy of diseases of the heart and circulation in children and adolescents” published by the German Society for Pediatric Cardiology with a low level of evidence (Guidelines).

The Competence Network for Congenital Heart Defects includes studies of right heart overload, right heart failure and diseases of the pulmonary system. The results of these studies, together with a critical appraisal of the available literature, will be incorporated into guidelines. These guidelines will improve quality of life and encourage the dissemination of scientific knowledge and clinical research. They will improve patient-oriented care and therefore reduce costs. In the diagnostic sections of the studies described above, standards have been developed within the Competence Network for the diagnostic testing of patients with pulmonary hypertension, the measurement of right ventricular (dys)-function by echocardiography and magnetic resonance tomography and the examination of patients during physical exertion.

Guidelines, which unite scientific knowledge and clinical experience, are of great use in improving prophylaxis, diagnostics and therapy in clinical treatment. The need for interdisciplinary guidelines to be developed has arisen from the increasing number of young people and adults with complex heart defects. Specialized groups in the USA and Canada have begun to develop specific recommendations for this growing group of patients. Transfer of foreign guidelines to the German situation, however, has proved to be not possible; suitable guidelines must be developed and implemented within the national health system. The insights gained in the project Evidence-Based Guidelines are expected to have a positive influence throughout Europe on the establishment of systematic health care policies for patients with congenital heart disease.