The more patients that survive into their teen an adult years, the greater the need to improve long term outcomes and quality of life. Physical Therapist Casey Vogel advocates for a focus on exercise in those with CHD, noting the benefits of physical activity on overall health.
Ten years ago, while interning as an exercise physiologist in the exercise lab at Children’s Hospital of Wisconsin’s Herma Heart Center, my interest in working with patients with Congenital Heart Disease (CHD) developed as I watched eight and nine year old patients out-perform their teen and adult peers on exercise stress tests. At that time, the value of exercise in patients with CHD was just beginning to emerge, and although performance on stress tests was utilized as one tool to determine overall cardiopulmonary function, many patients were restricted from formal exercise and/or athletic participation. These restrictions often limited patients’ opportunities to participate in similar activities to their peers. In addition, although exercise had been established as a valuable tool to improve physical function in adult patients with a cardiac and pulmonary disease, little research existed as to the value of exercise rehabilitation in patients with congenital heart disease.
I now work as a physical therapist at Ann & Robert H. Lurie Children’s Hospital of Chicago and have the unique opportunity to work with patients across the spectrum of CHD – with stable patients in the NICU-Cardiac Neurodevelopmental Clinic and with our most critically ill patients in the CCU. 10 years later, our culture is shifting to embrace the idea of exercise as a medicine to improve the outcomes of patients with CHD. Advances in medicine have also facilitated the shift in focus from surviving with CHD to thriving. Despite these shifts, there are still large gaps in research on how best to support physical development and fitness of patients with CHD throughout their lifespan. Despite the known prevalence of motor deficits at younger ages, there is only limited research on the motor challenges faced by school-aged and adolescent patients, and even less on which interventions may best support improved outcomes. If we want our patients with CHD to be physically active and maintain their aerobic capacity over time, we need to support their motor skill development, not only as infants, but throughout their childhood, so that they can participate in extracurricular activities alongside their peers. This has important implications outside the physical health domain – building social skills and promoting a positive self-image which may in turn have a major impact on quality of life. Additional research is also needed to identify targeted screening and intervention strategies to provide this support, not only to improve overall fitness but also to rehabilitate those who may have undergone additional surgeries.
Despite the progress, there continue to be many barriers to successful implementation of exercise as a medicine in patients with CHD. Additional research efforts are needed to measure provider, parent, and patient comfort levels with age-appropriate extracurricular activities and exercise in order to design intervention studies. Intervention strategies may need to focus not only on exercise but also exercise counseling – when to begin and how often to provide counseling. When are cardiologists and pediatricians beginning to provide education on exercise/physical activity and is it early enough to promote parent/patient comfort with age-appropriate participation? Two-year-olds exercise by climbing up the slide ladder at the park and three-year-olds by riding a tricycle. For a variety of reasons, young patients with CHD aren’t always given the same encouragement to test their physical limitations. If our patients don’t practice these skills early, how can we expect them to keep up with their peers and participate in formal exercise successfully as a teenager? Targeted intervention studies are also needed to measure not only physiologic outcomes, but also psychological outcomes and quality of life. Additional exercise studies examining home-based, clinic-based, and hybrid models taking advantage of the emergence of telemedicine, are important not only to measure the impact of exercise on overall health outcomes but also to allow for more opportunities to demonstrate the benefits of exercise to improve payer reimbursement.
My research hope in the New Year is to continue to expand our understanding of exercise as a medication that can not only improve health, but also transform lives. By continuing to explore screening and surveillance strategies and targeted interventions, I believe that our field will eventually be able to prove to patients, families, and providers alike that exercise and physical activity can improve long-term outcomes, improve participation in age-appropriate activities, and allow patients with CHD to thrive alongside their peers into adulthood.
Casey Vogel is a dual board certified clinical specialist in pediatric and cardiovascular and pulmonary physical therapy. She graduated from Marquette University in 2011 with a bachelor’s degree in Exercise Science and in 2014 with a doctorate degree in Physical Therapy. In 2016, she completed her pediatric residency at the University of Chicago Medical Center. She has been working at Ann & Robert H. Lurie Children’s Hospital of Chicago since 2016, where she is the lead physical therapist for the inpatient cardiac rehabilitation program, the VAD program, and the NICU Cardiac Neurodevelopmental Program School-Aged Clinic