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Arend van Deutekom

Fear of Sports: ‘How Can We Encourage Children with Heart Defects to Engage in More Enjoyable Physical Activities?’

About 25,000 children in the Netherlands are living with congenital heart defects. These conditions can cause heart valves to function improperly or result in malformed heart chambers, posing substantial challenges to both the affected children and their families. The looming uncertainties and daily anxieties can be overwhelming. For instance, fears may hold them back from playing tag in the schoolyard or joining a sports club, activities that are critical for their healthy growth. Arend van Deutekom, a pediatric cardiologist and ambition leader at Healthy Start, emphasizes the urgency of finding ways to alleviate these fears and motivate these children to be active. But how can this be achieved?

“Maintaining physical activity is not merely a health necessity; it serves as a vital social bonding tool. It encompasses the simple joys of children chasing one another, enjoying a football game, or bonding over a trampoline session. Unfortunately, not every child partakes in these activities sufficiently. In my role as a pediatric cardiologist, I observe that children with heart defects frequently hesitate to engage fully in physical activities, fearing potential strain on their hearts. Although these fears are occasionally valid, they are often unfounded. Engaging in physical activity can strengthen their hearts, mitigating the risk of future health complications and averting potential social or mental setbacks. At Healthy Start, I am exploring innovative strategies to encourage children with heart defects to embrace exercise joyfully, with a keen interest in leveraging smart technology, including smartwatches and apps, to this end.”

Children with a heart defect often don't dare to run and jump at full speed, afraid that their hearts can't handle it

Tennis and mountain walks

“From an early age, sport has played an important role in my life. I played tennis for a long time, and I did several multi-day treks through the mountains. I know from my own experience how nice it is to move. After high school, it was a logical step to pursue a career in medicine, where I developed a deep interest in pediatric physical health and eventually specialized in pediatric cardiology.”

I know from my own experience how nice it is to exercise

“Still, I didn’t want to focus solely on clinical work; I also wanted to do research. I think it is important not only to be able to provide good care today, but also in the future. Simultaneously with my training as a pediatrician, I started doctoral research into the influence of early childhood on later fitness. For example, how does a child’s birth weight affect muscle mass eight years later? To find out more about this, I researched hundreds of children. That was very fun and educational to do. I discovered that a healthy composition of bones and muscles is formed very early on. To fully understand this, I conducted research on hundreds of children, a process that was both enlightening and enjoyable. It revealed that the foundations for a healthy bone and muscle composition are established very early in life, necessitating the initiation of physical activity from a young age.

After my PhD I wanted to continue with research. I decided to focus on the influence of early childhood on the development of the heart. I thought that would be my future line of research. But just at that moment I came into contact with Maaike Kleinsmann, professor at TU Delft and an expert in the field of industrial design. She was looking for someone who wanted to supervise a master’s student in an internship in the field of smart technology in pediatric cardiology. To this day I am grateful for this encounter. It was the start of my current research into smart technology as a means of stimulating exercise in children with a heart defect.”

Smart Technology to Encourage Physical Activity

”In the years that followed, Maaike and I discovered a shared passion for getting children with chronic diseases to exercise more in an innovative way. Could we use smartwatches, smartphone apps or even clothing with sensors for this? Our enthusiasm grew. And we weren’t the only ones. The children, their parents, and patient associations such as the Hartekind Foundation also saw opportunities in our ideas.

In recent years we have had intensive conversations with children with a heart defect and their parents. We wanted to know exactly what they need when it comes to sports and exercise. For example, we discovered that both the children and their parents mainly want information. For example, which signals from the heart should they pay attention to during exercise? Which sport is safe to do, and which is not? In addition, there is a need for feedback. Is that heart pounding while running normal, or a sign of an arrhythmia? Finally, it is important that exercise should also be fun for children.”

We want to use a smartwatch that monitors the children’s heart during movement and gives a warning if there are any deviations

“To address this, we intend to employ smart technology to incentivize these children to exercise more, while making the process enjoyable. For example, think of a smartwatch. It can monitor the heart during exercise and give a warning if there are any abnormalities. At the same time, children could earn points via a smartphone if they have exercised enough. But before we get there, we still have a lot of steps to take. For example, most smartwatches are not designed for children, let alone children with a heart defect. So we don’t yet know whether existing wearables are reliable and usable for our purpose. We need to figure that out first.”

A Comprehensive Digital Platform

“I often realize how special it is that I can combine my personal interest in sports with the problems that I see in my office every day as a pediatric cardiologist. I really hope that we can help children with heart defects to move more with less worry. The fact that I can do research into this within Healthy Start is very valuable. Finally there is enough support and expertise to thoroughly investigate how smart technology can be used for children with a heart defect. In time, we want to develop a smart digital platform. Think of a place where all kinds of data come together from smartwatches, apps and other smart technology, up to and including information from the patient file. Then we would be able to see exactly for each child how their fitness is and what it takes to grow up healthy. Such a platform could also be relevant for other children who do not exercise enough as a result of a chronic condition, such as asthma or rheumatism.”

Getting used to each other’s language

“In the midst of Healthy Start, I collaborate with a diverse group including children, parents, industrial designers, behavioral scientists, neuroscientists, sports physicians, and sociologists. These collaborations are immensely valuable, albeit challenging at times. Initially, Maaike and I had to acclimate to each other’s research methodologies and terminologies. Now, we complement each other well, navigating the complexities of healthcare research with mutual understanding and patience.”

Arend van Deutekom’s Healthy Start perspective
“What I find particularly enriching about conducting research within Healthy Start is the collaborative opportunities it presents. It is not only enlightening and enjoyable but also essential for the project’s success. My expertise in cardiology is complemented by insights from various other fields, fostering a holistic approach to addressing the anxieties surrounding physical activity in children with heart defects. This synergy extends beyond the professional sphere, nurturing the next generation of researchers, a role that I find immensely fulfilling. I eagerly anticipate fostering this collaborative spirit in the years to come.”

Arend van Deutekom is involved in the ambition ‘digital empowerment of (children’s) physical activity’ as ambition lead.

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