Competence Network at the 44th Annual Meeting of the AEPC

The 44th Annual Meeting of the Association for Paediatric Cardiology (AEPC) will take place in Innsbruck, Austria, from 26 to 29 May 2010. The Competence Network for Congenital Heart Defects will have an information stand at the event to publicise the international projects Corience and Euripides, and scientists from the network will present current research findings on congenital heart defects.

Professor Angelika Lindinger of the Saarland University Hospital, Homburg, will outline the results of the PAN study, which recorded the prevalence of congenital heart defects in newborns in Germany over three complete birth cohorts for the very first time, and will also discuss the significance of demographic, genetic and peripartal factors in the study.

A further study, likewise conducted in Germany and entitled ‘Non-invasive imaging and objectively assessed exercise tolerance for tetralogy of Fallot’, allowed the incidence and severity of residual findings following correction of tetralogy of Fallot in more than 400 patients to be chronicled for the first time. Dr Samir Sarikouch of the Hannover Medical School (MHH) will present the findings from this study, which was conducted by the competence network and enabled heart defect-specific reference values for tetralogy of Fallot to be defined, thus permitting more realistic assessments of individual patients.

Dr Ulrike Bauer of the Competence Network for Congenital Heart Defects will talk about the medical care that is currently given to adults suffering from congenital heart defects. The LESSIE study, for example, which was set up to look at the quality of life and social situation of such individuals, revealed that adults with mild congenital heart defects tend to be supervised by a cardiologist, while those with severe congenital heart defects generally continue to be looked after by a paediatric cardiologist. A number of patients who completed the questionnaire reported that they receive no medical care at all – a situation that can, of course, have serious implications.

Wiebke Lesch of the Competence Network for Congenital Heart Defects will present some of the findings from the study on the information behaviour and needs of young people with congenital heart defects. She will argue that doctors often fail to provide the level of information their patients require, with the result that many young people with heart defects know little about their condition, and that supplementary sources of information should be made available to them as a matter of course.

We look forward to meeting you in person at our information stand!