Sports, fun and games. Daily physical exercise is also important for children and adolescents with congenital heart defects. It has been shown to improve well-being, strengthen nerves, muscles and the immune system, and promote concentration. What’s more, regular physical activity also counteracts the increased risk of life-threatening secondary diseases in patients with congenital heart defects. "Vascular constriction, obesity, lipid metabolism disorders, high blood pressure as well as diabetes are especially dangerous for patients with congenital heart defects. Prevention must begin in early childhood," says pediatric cardiologist Christian Apitz.

World's Largest Study of Physical Activity in Congenital Heart Defects

One hour a day. This is the minimum amount of physical activity recommended by the WHO, which is also essential for the physical, emotional and psychosocial development of children with congenital heart defects. But do patients adhere to it and are they advised according to their particular diagnosis? To find out, Christian Apitz and his team, together with sports scientist Claudia Niessner from the Karlsruhe Institute of Technology and pediatric cardiologist Jannos Siaplaouras, conducted the world's most comprehensive study of physical activity in children with congenital heart defects to date.

The researchers evaluated the complete data sets of 1,198 cardiac children aged 6 to 17 years (mean age 11.6 ± 3.1 years) with mild, moderate, and complex congenital heart defects according to Warnes and compared them with data from 3,385 participants of the same age from the KiGGS Motor Module Study. Nationwide, approximately 1,700 registry participants and their parents or guardians participated in the study and answered questions about physical activity, medical care, and exercise recommendations from their treating physicians.

Children with Congenital Heart Defects Do Not Exercise Enough

The result: only nine percent of children and adolescents affected by congenital heart defects keep physically fit for one hour a day. Among heart children with severe congenital heart defects, the figure was just eight percent. "That's three to four percent less than in the same-age heart-healthy comparison group of the KiGGS Motor Module Study. And already the results of this study are alarming," notes sports scientist Claudia Niessner.

The researchers also found major differences in the perception of the services offered by sports clubs. The proportion of children with complex congenital heart defects who regularly exercise in a sports club is almost 15 percent lower than among the participants in the KiGGS motor module study. Physically active patients with simple and moderate congenital heart defects, on the other hand, catch up with the KiGGS comparison group in terms of sports clubs.

Nevertheless, almost half of the children with severe congenital heart defects who are active in sports clubs say they participate in competitive sports, and the figure for simple and moderate heart defects is well over half. This puts children with congenital heart defects in competitive sports roughly on a par with KiGGS participants.

Exercise Strengthens and Is Fun

The survey results also clearly showed that physical activity is also fun for children with severe congenital heart defects and is good for them all round. Regardless of the severity of the congenital heart defect, the enjoyment of sport increased with the respondents' physical activity.

Those who were more active in sports also rated their performance significantly more positively. Strength, speed, skills, coordination, flexibility and, above all, endurance were perceived to be more intensive in this group than in patients with limited physical activity.

"These children are extremely enthusiastic and motivated about sports. And they also have a more positive self-perception, a very important factor for maintaining health and quality of life. We currently count eleven active children's heart sports groups in Germany. This unsatisfactory number contrasts with around 6,000 active heart sports groups for adults. This situation cannot stay like this. We urgently need additional new concepts for individual advice and support," warns Christian Apitz. Conversely, it is shown that the joy of exercise decreases with a lack of physical activity. "In our opinion this is particularly critical. A downward spiral quickly develops here, leading to inactivity."

Doctors Give Overly Cautious Advice

The researchers therefore unanimously recommend that physical activity programs should be significantly expanded, especially for children and adolescents with severe congenital heart defects. Doctors should also regularly consult with each other about the physical activity of their patients and inform them individually about the urgent need to take advantage of such opportunities.

The research team led by pediatric cardiologist Christian Apitz from Ulm University Hospital was surprised by the number of study participants who stated that they had restricted their physical activity on medical advice. This was the case for half of children and adolescents with complex congenital heart defects and one in three patients with moderate congenital heart defects. Among patients with simple congenital heart defects, this was the case in one in eight.

The scientists see an urgent need for action here: " We knew from other studies that parents and caregivers in particular tend to keep young heart patients in a protective bubble. The fact that similar behavior can be also observed among the attending physicians fills us with concern. This is a gap in advice that urgently needs to be closed," says Christian Apitz.

The scientists can only speculate about the reasons. "It is hard to imagine that colleagues are ignoring the WHO recommendations. It is more conceivable that they are being overly cautious, which is also due to the increased workload. Doctors must be allowed to take time for the individual patient. The daily routine in hospitals today hardly allows this. Here, staff shortages and economic constraints compete with the health and quality of life of the individual patient," notes his team colleague, pediatric cardiologist Jannos Siaplaouras.

This study was supported by the Fördergemeinschaft Deutsche Kinderherzzentren e. V.