Empowering Patients: Highlighting Abilities Over Limitations

Understanding Activity Levels in Children with Cardiac Disease

If you’re a parent or caregiver of a child with an inherited cardiac disease, you might have concerns about their level of physical activity. It’s not uncommon to limit a child’s activities due to fears of exacerbating their condition. But you might find recent research enlightening.

Consider a scene from the late 1960s in the cardiology clinic of Boston Children’s Hospital. A mother expressed her relief and gratitude because her six-year-old son, having recently undergone successful heart surgery, was finally able to be active enough to wear out his shoes. This story highlights the impact that cardiac health can have on a child’s ability to engage in regular activities.

Importance of Physical Activity in Children with Cardiac Disease

This anecdote came to mind upon reading a recently published paper in JAMA Network Open. The cross-sectional study, involving 207 participants, revealed that children and adolescents with inherited cardiac diseases have lower levels of cardiovascular fitness and physical activity compared to their healthy peers. Various clinical, functional, sociodemographic, and behavioral parameters could explain 80% of the VO₂ max.

While structural limitations can potentially restrict a child’s activity and fitness, the research suggests that other modifiable factors come into play. Previous research has shown associations between reduced cardiopulmonary fitness and poor psychosocial health. This is particularly concerning for youths with inherited cardiac diseases, whose psychosocial well-being may already be threatened.

Exploring Exercise Training Programs for Children with Cardiac Disease

The research team discovered that over one third of the children with inherited cardiac disease exhibited such poor cardiac fitness that they might qualify for an exercise training program. Of course, such programs could carry risks for some individuals. To address these risks, the authors propose a multidisciplinary approach, involving cardiologists, exercise physiologists, behavioral specialists, and social workers.

Upon reflecting on the heartening story of the boy with new shoes, it becomes clear that there may have been other elements contributing to his inactivity. Perhaps his family discouraged physical activity due to fears of it being dangerous. Or maybe the parents decided independently to limit their child’s engagement in what they perceived as risky activities. This caution may have been fueled by their healthcare providers’ own concerns about the child’s activity level.

Addressing Parental Fears and Encouraging Safe Physical Activity

This hesitance to include physical activity in the management of acute and chronic pediatric illnesses is not unique to cardiac disease. Similar apprehensions can occur in families dealing with a variety of health issues, such as an orthopedic injury, a respiratory problem like asthma or cystic fibrosis, or an inflammatory joint disease.

When it comes to physical activity, caregivers and healthcare providers often concentrate on what a child shouldn’t do, ignoring the vast array of activities that are safe and beneficial. A well-thought-out, personalized program of activity can greatly improve a child’s quality of life and health outcomes. Nowadays, medical professionals recognize that physical activity – even after surgery or during concussion recovery – often accelerates recovery and improves overall well-being.

Promoting Physical Activity for a Healthy Childhood

Physical activity is a cornerstone of a healthy lifestyle, offering a range of physiologic, psychological, and emotional benefits. A child’s illness should not completely prevent them from enjoying and benefiting from physical activity. With some creativity and guidance, a tailored activity program can focus on what the child can do, rather than on what they can’t.