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Establishing a Comprehensive Pediatric Cardiac Fitness and Rehabilitation Program for Congenital Heart Disease

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Abstract

Children and adolescents with congenital heart disease often do not have the opportunity, inclination, or education to participate in safe and effective exercise. The consequences of this behavioral pattern affect not only cardiopulmonary parameters, but also psychosocial factors, especially when lack of participation in peer activities or sports leads to isolation and further sedentary behaviors. Importantly, unlike cardiac rehabilitation programs for adults with atherosclerotic disease, the goal for congenital heart disease patients was less about “rehabilitation” and more about promotion of optimal fitness. We thus developed a comprehensive “Cardiac Fitness Program” at Boston Children’s Hospital to promote exercise training, enhanced self-confidence, and motivation for patients with congenital heart disease. Since much of sustained fitness relates to consistency and behavior change, we crafted a progressive, goal-oriented exercise curriculum and augmented it with a self-learning workbook of targeted positive mindset practices to develop self-efficacy, an app for motivation and data collection, and exercise videos to demonstrate mechanics and to reiterate a positive message. We now report our experience including program structure and framework, navigating insurance, curriculum development, and outcome measures. Methods employed and barriers encountered in the initial development and execution of this program are reviewed. Key take-aways and further considerations including virtual and home-based programs are discussed.

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Acknowledgements

The authors would like to acknowledge Allison Mitchell, Jennifer Pymm MS, Nicole Goveia, Rachel McGrath MS, Rachel Marrano, and Keri Shafer MD for their contributions to the program and dedication to the patients. The program was supported by a Boston Children’s Hospital Heart Center Strategic Investment Fund.

Funding

The Cardiac Fitness Program was supported by a grant from the Heart Center Strategic Investment Fund.

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Authors and Affiliations

  1. Department of Cardiology, Boston Children’s Hospital, Boston, USA

    Naomi Gauthier, Tracy Curran, Julie Ann O’Neill, Mark E. Alexander & Jonathan Rhodes

  2. Department of Cardiology, Boston Children’s Hospital, 300 Longwood Avenue BCH 3215, Boston, MA, 02115, USA

    Naomi Gauthier

Authors
  1. Naomi Gauthier
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  2. Tracy Curran
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  3. Julie Ann O’Neill
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  4. Mark E. Alexander
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  5. Jonathan Rhodes
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Contributions

NG, TC, and JAO’N conceived of the program, helped develop the tools, directly participated in the clinical delivery, and contributed to all levels of manuscript revisions. NG and Tracy Curran secured primary funding. Jonathan Rhodes provided initial framework for the program and participated in manuscript critical review and revisions. MA assisted with program and policy development as well as manuscript review and submission. The first draft of the manuscript was written by NG and all authors commented on previous versions of the manuscript. All authors approved of the final manuscript.

Corresponding author

Correspondence to Naomi Gauthier.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethics Approval

This research study was conducted retrospectively from data obtained for clinical purposes. We consulted extensively with the IRB of Boston Children’s Hospital who determined that our study did not need IRB approval but met criteria for exemption based on using de-identified aggregate data (45 CFR 46.101(b)(4)).

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Gauthier, N., Curran, T., O’Neill, J.A. et al. Establishing a Comprehensive Pediatric Cardiac Fitness and Rehabilitation Program for Congenital Heart Disease. Pediatr Cardiol 41, 1569–1579 (2020). https://doi.org/10.1007/s00246-020-02413-z

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  • DOI: https://doi.org/10.1007/s00246-020-02413-z

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