By Melissa McMahon, MS, ACSM EP-C, and Kendra M. Ward, MD, MS

Cardiac rehabilitation (CR) is not just for adults. For decades, the CR platform has focused on building coverage and access for adult cardiac patients, overshadowing the parallel need to address complex pediatric heart patients. Exercise interventions that focus on improving clinical outcomes and quality of life in children are growing, with data supporting the value and long-term benefits of providing structured programming to this unique patient population.

Target Patient Populations

Congenital heart disease (CHD) affects about 1% of all live childbirths and is the most common congenital diagnosis in newborns. ¹ Advances in the surgical and medical care of patients born with congenital heart defects have increased the likelihood of surviving to adulthood. Despite these improvements, patients with CHD may face multiple comorbidities and notable disease burden throughout their lives. Patients living with repaired CHD may have decreased functional capacity, increased frailty, and/or frequent procedures and hospitalizations. Preserving and improving physical function may improve the longevity and quality of life of CHD patients, highlighting the need for programming, access, and insurance coverage for pediatric CR and fitness interventions.

While all children with CHD likely benefit from exercise and rehabilitation interventions, we have identified some patient populations with greater need. For example, children born with a single ventricle physiology often experience progressive heart failure despite successful Fontan palliation procedures. Structured exercise intervention can help preserve and improve physical function and may delay the need for more invasive interventions like heart transplantation. CR can also help the child waiting for a heart transplant to preserve functional capacity, with the intention of improving outcomes and decreasing post-operative hospitalization times.  Similar to adults, pediatric patients with heart failure and/or orthotopic heart transplantation benefit from routine exercise intervention and structured programming, with research supporting improved quality of life and functional capacity.

The need for pediatric CR intervention does not stop with single ventricle and heart failure patients.

Anxiety about exercise participation and overprotection of caregivers is common among pediatric CHD patients, which can lead to physical inactivity and exercise intolerance.² Participating in supervised, monitored, and structured CR can provide reassurance and validation of exercise safety for weary patients who may self-restrict.   

Pediatric Program Structure

Guidelines for pediatric CR are not yet established, but attention to this care gap is growing. The structure of pediatric programs is similar in some ways to the adult CR model, engaging pediatric patients in regular, structured exercise programming while teaching them healthy lifestyle habits for long-term compliance. Session frequency for outpatient CR is targeted at three sessions per week for 12 weeks, followed by transition to independent exercise programming. Sessions include 60-90 minutes of telemetry-monitored individualized or group exercise sessions, targeting key fitness components and using an individualized education structure.^{3, 7}

Pediatric CR Personnel

Pediatric CR programs aim to comply with adult CR program regulations, which include pediatric board-certified physician supervision and medical director oversight. Pediatric CR staff include clinical exercise professionals with specialized training and knowledge of cardiac conditions affecting children. CR personnel should hold certification in pediatric and adult advanced cardiac life-support and specialized training in ventricular assist device (VAD) management if engaging with VAD patients. 

Special Considerations for the Pediatric CR Patient

Pediatric CR differs in several ways from adult CR. Creating developmentally appropriate exercise intervention requires an understanding of normal and abnormal pediatric and adolescent growth and development. Additionally, the exercise environment should be fun and creative, offering a variety of activities and options to engage in developmentally appropriate activities.  Many CHD patients have developmental delays, ADHD, or autism spectrum disorder; and specific skills are needed to optimize the effectiveness of sessions for patients with learning differences.⁴  Finally, CHD encompasses many different lesions, repairs, and varied cardiac physiology. Understanding all types of CHD is paramount to safe and effective care delivery. 

Engaging chronically ill children in exercise can be challenging. Careful consideration should be placed on the patient's attention span and ability, understanding, or comprehension of exercises. This can make it challenging to offer group sessions, so careful consideration is placed on delivery style and training methods. To promote pediatric patient engagement, it is important to create a supportive environment, offering empathy and encouragement to build a relationship of trust between the exercise professional and the pediatric patient in a setting that supports patient success during and outside of CR sessions.⁵

Pediatric Program Challenges

Center-based exercise intervention is not always feasible for pediatric patients. Limitations to participation include transportation, distance to pediatric centers, and school and work schedules as well as insurance coverage. To support participation, many pediatric centers offer hybrid or home-based sessions, which have demonstrated promising outcomes similar to that of center-based sessions in adults.⁶ 

Key Takeaways for the CR Program Professional

Pediatric patients with heart conditions need CR program access. Guideline development and work to recognize the needs of this patient population should be prioritized to optimize patient outcomes. Potential future directions for pediatric CR delivery may include adult and pediatric center partnerships to safely expand pediatric CR program access. 

REFERENCES

1. Wu, Weiliang MDa,∗; He, Jinxian MDb; Shao, Xiaobo MDa. Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990–2017. Medicine 99(23):p e20593, June 05, 2020. | DOI: 10.1097/MD.0000000000020593

2. Tikkanen AU, Oyaga AR, Riaño OA, Álvaro EM, Rhodes J. Pediatric cardiac rehabilitation in congenital heart disease: a systematic review. Cardiol Young. 2012 Jun;22(3):241-50. doi: 10.1017/S1047951111002010. Epub 2012 Jan 17. PMID: 22251378.

3. Akamagwuna, Unoma and Daryaneh Badaly. “Pediatric Cardiac Rehabilitation: a Review.” Current Physical Medicine and Rehabilitation Reports 7 (2019): 67-80.

4. Bowling AB, Frazier JA, Staiano AE, Broder-Fingert S, Curtin C. Presenting a New Framework to Improve Engagement in Physical Activity Programs for Children and Adolescents With Social, Emotional, and Behavioral Disabilities. Front Psychiatry. 2022 May 6;13:875181. doi: 10.3389/fpsyt.2022.875181. PMID: 35599761; PMCID: PMC9122030.

5. Antoniadou, M., Granlund, M., & Andersson, A. K. (2024). Strategies Used by Professionals in Pediatric Rehabilitation to Engage the Child in the Intervention Process: A Scoping Review. Physical & Occupational Therapy In Pediatrics, 1–28. https://doi.org/10.1080/01942638.2023.2290038

6. Thomas RJ, Beatty AL, Beckie TM, Brewer LC, Brown TM, Forman DE, Franklin BA, Keteyian SJ, Kitzman DW, Regensteiner JG, Sanderson BK, Whooley MA. Home-Based Cardiac Rehabilitation: A Scientific Statement From the American Association of Cardiovascular and Pulmonary Rehabilitation, the American Heart Association, and the American College of Cardiology. J Am Coll Cardiol. 2019 Jul 9;74(1):133-153. doi: 10.1016/j.jacc.2019.03.008. Epub 2019 May 13. PMID: 31097258; PMCID: PMC7341112.

7. Ubeda Tikkanen A, Vova J, Holman L, Chrisman M, Clarkson K, Santiago R, Schonberger L, White K, Badaly D, Gauthier N, Pham TDN, Britt JJ, Crouter SE, Giangregorio M, Nathan M, Akamagwuna UO. Core components of a rehabilitation program in pediatric cardiac disease. Front Pediatr. 2023 May 31;11:1104794. doi: 10.3389/fped.2023.1104794. PMID: 37334215; PMCID: PMC10275574.

Melissa McMahon, MS, ACSM EP-C, is the cardiopulmonary labs manager at Ann & Robert H. Lurie Children’s Hospital of Chicago. She is a clinical exercise physiologist with a background in pediatric clinical exercise testing, prescription, rehabilitation, and program development.

Kendra M. Ward, MD, MS, is a pediatric cardiologist and electrophysiologist who is passionate about delivering exercise medicine to pediatric patients with chronic medical problems. She is the director of the Pediatric Cardiac Rehabilitation and Exercise Medicine programs at the Ann & Robert H. Lurie Children’s Hospital of Chicago.