Congenital heart defects

Quality of life

Thanks to the immense progress made over the past few decades in the treatment of congenital heart defects, about 90% of children now survive and reach adulthood. Now that their life expectancy has been improved, it is time to carry out extensive research into the actual quality of their lives. This is one of the scientific tasks being pursued in the Competence Network for Congenital Heart Defects.

While most children with a congenital heart defect are considered by their parents to be in good to very good health, certain difficulties start to appear when they get older. The first results of the LESSIE study show that adult patients feel their physical strength is limited in comparison to the average member of the population. Some 1,500 adults aged between 18 and 86 years and suffering from a congenital heart defect participated in the LESSIE study. All of them are listed in the National Register for Congenital Heart Defects. Learning to live with a heart defect generally means learning to live with physical restrictions. Boys going through puberty suffer more from these restrictions than girls of the same age. However, as they get older, they start to regain more confidence in their physical abilities.

The restrictions imposed on young adults by their physical health have a negative psychological effect, given that this is the age when they face an increased number of challenges and life changes, such as leaving home, taking up a career, or starting a family. The added burden of physical limitations becomes much more difficult to cope with at this stage in their lives.

Despite all physical restrictions, the results of the LESSIE study paint a very positive picture in terms of the educational level of patients with congenital heart defects. Across all adult patient groups, including the cohort with the most severe heart defects, the proportion having obtained an advanced level of education is higher than the general average. When it comes to obtaining work on the employment market, however, it is an entirely different story. On average, far fewer people with congenital heart defects manage to find full-time employment than people in full health. This particularly affects patients with severe heart defects. A large number work in part-time jobs or take early retirement for health reasons. Many of those concerned cite problems of mobility and inflexible working hours as being the greatest obstacle in their professional lives.