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Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease

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Abstract

National management guidelines recommend that patients with moderate and complex congenital heart disease (CHD) receive life-long cardiac care (LLCC), guided in adulthood by an adult congenital heart disease (ACHD) specialist. However, the percentage of adult CHD patients who receive such care is quite low. Inadequate knowledge regarding LLCC may contribute to care interruption. We, therefore, sought to determine the knowledge of adolescents and young adults regarding LLCC. In this multi-center study, we administered a survey to patients 13–20 years of age with surgically repaired congenital heart disease. We assessed the understanding of both their need for LLCC and awareness of the type of recommended care providers. A total of 290/302 (96%) patients approached in the outpatient clinic setting (10 centers) agreed to study participation; mean age was 16.3 ± 2.3 years; patients were 62% male. While the need for LLCC was recognized by 78% of subjects, only 37% understood that an ACHD specialist in adulthood should guide this care. Only 37% of respondents stated that their current cardiology team had spoken to them about LLCC, but 90% wished to learn more. A substantial number of adolescents and young adults with moderate and complex CHD lack adequate knowledge about LLCC, but most have a desire to learn more about the type of care they will require in adulthood. Transition education/assessment ensuring successful transfer to adult-oriented care for this population should emphasize the importance of LLCC.

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Acknowledgements

The authors would like to thank the Adult Congenital Heart Association, the American College of Cardiology's Adult Congenital and Pediatric Cardiology Section, and the Section's ACHD Work Group for their support and guidance. The authors would also like to acknowledge the numerous individuals who helped with this project, including Miranda Zinsman, BA; Kirstie MacMillen, MS, PA-C; Melissa Jenkins, BS; and Amruta Gavali, BS.

Funding

The project described was supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1 RR025744. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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Authors and Affiliations

  1. Division of Pediatric Cardiology, Department of Pediatrics, Stanford University, Palo Alto, CA, USA

    Susan M. Fernandes

  2. Division of Cardiovascular Medicine, Department of Medicine, Stanford University, Palo Alto, CA, USA

    Susan M. Fernandes

  3. Adult Congenital Heart Association, Philadelphia, PA, USA

    Amy Verstappen

  4. Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA

    Mathieu Clair, Michael J. Landzberg & Disty Pearson

  5. Knight Cardiovascular Institute, Oregon Health and Science University, Portland, OR, USA

    Mary Rummell

  6. Division of Cardiology, Akron Children’s Hospital, Akron, OH, USA

    Deena Barber & Kathleen Ackerman

  7. Division of Cardiology, Children’s Hospital of Minnesota, Minneapolis, MN, USA

    Kirsten Dummer

  8. Division of Cardiology, Children’s Hospital of Los Angeles, Los Angeles, CA, USA

    Joseph C. Mares, Masato Takahashi & Roberta Williams

  9. Division of Cardiology, University of California Los Angeles, Los Angeles, CA, USA

    Mary M. Cannobio & Leigh C. Reardon

  10. Department of Medicine, Stanford University, Quantitative Sciences Unit, Palo Alto, CA, USA

    Jin Long

  11. Division of Cardiology, Nationwide Children’s Hospital, Columbus, OH, USA

    Stephen Crumb

  12. Division of Cardiology, Massachusetts General Hospital, Boston, MA, USA

    Ami Bhatt

  13. Montreal Heart Institute, Montreal, QC, Canada, USA

    Paul Khairy

  14. Division of Cardiology, Phoenix Children’s Hospital, Phoenix, AZ, USA

    Tabitha Moe

  15. Stanford University School of Medicine, 150 Governor’s Lane, T242, Stanford, CA, 94305, USA

    Susan M. Fernandes

Authors
  1. Susan M. Fernandes
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  2. Amy Verstappen
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  3. Mathieu Clair
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  4. Mary Rummell
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  5. Deena Barber
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  6. Kathleen Ackerman
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  7. Kirsten Dummer
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  8. Joseph C. Mares
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  9. Mary M. Cannobio
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  10. Leigh C. Reardon
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  11. Jin Long
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  12. Stephen Crumb
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  13. Ami Bhatt
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  14. Masato Takahashi
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  15. Paul Khairy
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  16. Roberta Williams
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  17. Michael J. Landzberg
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  18. Tabitha Moe
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  19. Disty Pearson
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Consortia

The Adult Congenital Heart Association and the Adult Congenital Cardiac Care Associate Research Group

Corresponding author

Correspondence to Susan M. Fernandes.

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Conflict of interest

The authors of this manuscript declare no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Fernandes, S.M., Verstappen, A., Clair, M. et al. Knowledge of Life-Long Cardiac Care by Adolescents and Young Adults with Congenital Heart Disease. Pediatr Cardiol 40, 1439–1444 (2019). https://doi.org/10.1007/s00246-019-02154-8

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  • DOI: https://doi.org/10.1007/s00246-019-02154-8

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