Communication

Patients with congenital heart defects (CHD) are chronically ill and in most cases have need of lifelong medical and psychosocial care to obtain a positive prognosis. Their level of knowledge concerning the disease and how this helps them to adapt their behaviour are equally as important as good medical care.

While the patient is still a child, all day-to-day decisions concerning health and general education are taken by the parents. Once they reach adulthood, most young patients want to lead a normal life and often pay no attention to the limitations imposed by their state of health.

A lack of information on important health-related aspects of everyday life relevant to their disease (e.g. questions concerning pregnancy, endocarditis prophylaxy, choice of professional occupation), and an insufficient degree of acceptance of the disease, can have serious or even life-threatening consequences on the patient’s health.

In this study, a survey of a total of 1,300 patients of different age and diagnosis groups will provide a basis to investigate the information-related behavior and information needs of patients with CHD in childhood, adolescence and early adulthood.

The patients are written to by the National Registry for Congenital Heart Defects. In addition, a benchmark analysis will be performed to evaluate national and international best practice examples of successful information on CHD or conditions that involve similar problems (juvenile diabetes, asthma).

Based on the findings on information-related behavior, pilot projects are to be launched to realize new formats for imparting information about health issues that are important for patients with CHD. The aim is to promote patients’ attention to their disease at an early stage. The offers of information are designed to strengthen the patient’s role as active partner in a lifelong process of care and to increase the sense of personal responsibility in matters of health.