The latest Biannual Meeting Of The Working Group On Psychosocial Care From Fetus To Adult in Lake Balaton Hungary was – again – a success. For the first time in history, this biannual meeting was organised in an eastern European country. The council especially wants to thank Dr Szatmari for his kind hospitality. The venue was splendid, the weather was fine, the food was excellent and the company extremely pleasant!
More than 53 participants from 12 countries came to Lake Balaton to join this unique meeting. Doctors, nurses, psychologists, parents and patients concentrated forces to analyse and discuss non-medical needs of patients with congenital heart disease. The level of the lectures was high. Over the past years, the number of well performed neuropsychological studies seems to increase quickly. A small selection of the different topics:
When multiple European countries gather to discuss care for congenital heart disease, inequality is striking, even for neighbouring countries. Eastern Europe tries hard to catch up with the west, but political and economical barriers remain high. Where psychosocial care gains importance in the west, pure medical treatment often remains a huge problem in the east. Also in well-developed countries, there are still important differences in quality of care. Large registries, like the SWEDCON in Sweden, can help to improve and equalise quality of treatment and follow-up.
Although treatment and thus outcomes have improved over the last decades, patients and parents are still facing problems with feeding, school and education and career choices. Individual projects have been started to support patients and parents in these particular fields. Pacemakers have become a “normal” treatment for life threatening arrhythmias. However, they seem to have an important negative impact on quality of life and stress-level. Special attention to these particular problems may be necessary.
Year after year, it becomes more obvious that in future grown-ups (GUCHes) will predominate the field of congenital heart disease. They will face their particular medical and psychosocial difficulties. Time presses to develop large GUTCH clinics with specialised cardiologists and to organise an adapted transition.
This year, the young investigators award was granted to Mila Markova from Bulgaria. She studied coping strategies of parents with children with congenital heart disease in her country. Her results show that parents accept, understand and survive the stressful situation in different ways. Mothers are likely to use a more passive and emotional coping strategy while fathers prefer a more active and problem solving focused one. This data will be used in the future to establish a training programme and book.