GUCH Task Force

In 2005, the country’s three specialist cardiology associations (the German Society for Cardiology, the German Society for Paediatric Cardiology and the German Society for Thoracic and Cardiovascular Surgery), the various professional associations for resident (paediatric) cardiologists, the Competence Network for Congenital Heart Defects and the umbrella organisation for self-help groups all united to form the GUCH task force. The role and objectives of this task force are threefold:

• to draw up recommendations regarding the structure of interdisciplinary care of adults with congenital heart defects (GUCH),
• to produce guidelines for the treatment of GUCH, and
• to suggest curricula for advanced vocational and professional development training courses for doctors working with GUCH.

The ultimate aim of these measures is to establish the structural and medical prerequisites for a comprehensive care system for adults with congenital heart defects. In parallel, action is also being taken to provide continuing professional development to ensure sufficient numbers of qualified GUCH physicians. There is currently a shortage of such specialists almost everywhere in the world, not just in Germany.

The guidelines were drafted in collaboration with all the different specialist cardiology associations in Germany, Austria and Switzerland, as well as the competence network and patient organisations. In addition to giving an overview of the particular medical characteristics of congenital heart defects in adults, they cover a variety of medical aspects such as haemodynamics, arrhythmias and cyanosis, and discuss the most significant kinds of heart defect. Readers suffering from CHD will find they provide an excellent introduction to managing their personal long-term care requirements. The guidelines also make it clear that many adults who have had surgery or partial surgery to repair a congenital heart defect require constant and consistent long-term care.

In 2006, the task force produced a set of recommendations on how to improve the quality of the interdisciplinary care provided by GUCH physicians in specialist practices and regional and supra-regional centres. These recommendations included the introduction of supplementary qualifications for attending physicians, and specialist advanced professional training has been available for GUCH physicians since 2008. Individuals who provide evidence of their capabilities and pass an exam are awarded a specific supplementary qualification in the treatment of adults with congenital heart defects. Interested physicians should contact the Academy of the German Society for Paediatric Cardiology (DGPK).

Germany has a nationwide network of university hospitals/cardiac centres and paediatric cardiology practices that provides excellent care for infants, children and adolescents with congenital heart defects. However, once they reach the age of majority, many CHD patients discover that the options available to adults are far more limited. To meet this pressing need, the task force intends to rapidly establish a sensibly planned regional network of appropriately equipped care facilities tailored to the requirements of the country’s increasing number of adult CHD patients. Physicians from different specialist fields with an acquired knowledge and experience of caring for patients with congenital heart defects will work together within these structures. For optimal care to be achieved in Germany, it is generally acknowledged that the country should be striving towards a multi-layered system comprised of supra-regional and regional centres operating alongside specialist practices.

The task force is currently working on the certification criteria that a hospital or practice will need to fulfil. Before the year is out, centres will be able to apply for certification as a supra-regional or regional centre, and practices for certification as a specialist practice.