We all know that physical activity is a decisive key to well-being and health. In June 2023, at the Special Olympics World Summer Games in Berlin's Olympic Stadium, even the youngest athletes with mental or multiple physical disabilities impressively demonstrated that sport also connects people, that it is fun, and improves physical and mental performance as well as self-awareness.

Even children and adolescents with congenital heart defects enjoy and master athletic challenges with ease when they are encouraged to do so from an early age. "Most have been shown to keep up well with their heart-healthy peers. Today, we only advise against sporting activity in exceptional cases, namely if there is a life-threatening illness or if a medical intervention is imminent," says Professor Christian Apitz, senior pediatric cardiologist at the University Hospital in Ulm.

Does Physical Self-Concept Influence Athleticism?

The importance of joint sports with physically unimpaired peers for the quality of life and health of children and adolescents with congenital heart defects is also indicated by new results of the research project S-BAHn (Sport Bei Angeborenen Herzfehlern), which is being conducted under his leadership in cooperation with the National Registry for Congenital Heart Defects on the basis of the KiGGS study.

Together with the pediatric cardiologist Professor Jannos Siaplaouras from Fulda, the psychologist Paul Helm from the National Registry and the sports scientist Claudia Niessner from the Karlsruhe Institute of Technology, the research team led by Professor Christian Apitz investigated more broadly for the first time what influence the physical self-concept, the self-perception of physical performance, has on the sporting activity of children and adolescents with congenital heart defects.

What Can My Body Do?

For this purpose, 1,198 participants in the National Registry aged between six and 17 years assessed their physical performance in the categories of general athletic ability, strength, endurance, speed, agility and coordination. "Children and adolescents with congenital heart defects who tended to rate their physical ability high were significantly more physically active than heart children whose self-assessment scores were lower or intermediate," Paul Helm reports.

Remarkably, the researchers found that children and adolescents with mild congenital heart defects were even more optimistic about their physical coordination and mobility than the heart-healthy KiGGS comparison group. "The fact that patients nevertheless participate in sports less frequently makes it clear that we need to find new ways to support children and adolescents with congenital heart defects in a physically active lifestyle. This requires appropriate offerings in school and leisure time as well as holistic treatment plans that include sporting activities," says the psychologist.

Targeted Empowerment

Conversely, it was found that a lower evaluation of one's own physical ability was associated with a lack of physical activity. This correlation was striking in children and adolescents with severe congenital heart defects.

"We know from other studies that children and adolescents with severe congenital heart defects tend to have a more realistic self-assessment than children and adolescents with mild congenital heart defects," Paul Helm classifies. At the same time, he says, it is important to encourage young patients to have a positive body image. "Instead of wrapping them in bubble wrap, we should specifically support their equal participation in sports activities."

Soberingly Unathletic

S-BAHn figures show all too clearly how necessary that is. One hour of moderate to intense physical activity a day is the minimum recommended by the WHO for children and adolescents. But even among children and adolescents in Germany with healthy hearts, only 12 percent achieve this according to KiGGS. In the group of children and adolescents with congenital heart defects, the figure is just 8.8 percent.

However, there is no talk of "daily" either among them or in the KiGGs comparison cohort. "Even the more athletic heart patients come to a far too low total weekly activity with a maximum of three and a half days. Compared to the heart-healthy children, who are active on four days on average, this is only slightly worse, but on balance it is an equally sobering result," says study author Claudia Niessner.

Overprotection Sets Vicious Circle in Motion

In the researchers' view, the concern of many parents, colleagues and educators to overtax children with congenital heart diseases plays a central role. This is unfounded in most cases, but leads to overprotection and thus triggers a whole cascade of problems. "Too little sport and exercise leads to a reduction in motor skills. This in turn increases anxiety among children and parents. It's a vicious cycle. Social contacts with peers break away, which further restricts the family's radius of action. And the children's health eventually falls by the wayside," observes pediatric cardiologist and sports physician Professor Jannos Siaplaouras.

Prevention Must Start Early

The fact that a lack of exercise is risky is also shown by current developments, as Professor Christian Apitz points out. "In general, the incidence of high blood pressure and obesity in children and adolescents is increasing. If in addition there is a lack of exercise, it can quickly become dangerous in children with congenital heart defects. Furthermore the risk of serious secondary diseases, including heart attacks, is especially increased in patients with severe heart defects." That's why prevention through sports and exercise is important from an early age, he said.

Expand Inclusive Sports and Exercise Opportunities

The researchers strongly recommend the establishment and expansion of inclusive participation, physical activity, and sports opportunities in schools, clubs, and other safe places where children and youth can meet. Playing sports together with heart-healthy peers is important for health, psychological and social reasons. This is especially true for dynamic sports that promote both team spirit and endurance, he said. "Team spirit helps combat loneliness. Endurance sports also benefit children and young people with severe congenital heart defects," Professor Christian Apitz said.

Not just a one-off gigantic sports festival, but more inclusion, more togetherness: that's also what the Special Olympics stars, who were recently celebrated at the Brandenburg Gate in Berlin, want. And rightly so.