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Development of a transition program for adolescents with congenital heart disease

European Journal of Pediatrics volume 179, pages 339–348 (2020)Cite this article

Abstract

Thanks to advances in care, most children with congenital heart disease nowadays survive into adulthood. The majority of patients remain at high risk for future complications. Hence, life-long follow-up is mandatory. Care needs of patients evolve, especially when reaching adulthood. A structured transition period to adult care is advocated. Currently, a fully detailed and structured transition program is not available for patients with congenital heart disease. The aim is to describe the development and design of a multicomponent transition program for adolescents with congenital heart disease, called “Transition with a heart.” Transition with a heart was developed based on the Dutch program “On your own feet,” starting at the age of 12 years and continuing after transfer. The most vital core components include a general and individualized flowchart, adolescent-centered communication, a joined transfer consultation, and an appointed transition coordinator. Adolescents are gradually informed about their condition and potential late consequences in adult life and stimulated to take medical care in their own hands.

Conclusion: Transition with a heart is a practical, multicomponent, comprehensive transition program developed to cover the essential aspects of transitional care for adolescents with congenital heart disease (i.e., continuity of care, disease knowledge, and self-management skills). Interventions were selected from the highest sources of scientific evidence currently available.

Clinical trial registration: Not applicable

What is Known:
• Transition towards adult life and health care is a complex process, requiring careful patients’ guidance. Various task forces have described the need and potential benefits of transition programs in young people with chronic conditions. Details about the practical development and content of such programs in congenital heart disease are, however, currently lacking.
What is New:
• This method paper presents the development and design of a person-centered multicomponent transition program for adolescents with congenital heart disease comprising interventional components covering the most important aspects of transitional care: promoting autonomy, disease knowledge, and continuity of care.

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Abbreviations

CHD:

Congenital heart disease

ITP :

Individual transition plan

LKQCHD:

Leuven Knowledge Questionnaire for Congenital Heart Disease

OYOF:

On your own feet

PedsQl:

Pediatric Quality of Life inventory

TC:

Transition coordinator

TRAQ:

Transition Readiness Assessment Questionnaire

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Acknowledgments

The authors acknowledge the valuable contribution of Joseph Panzer (MD), Hans De Wilde (MD), Karen Logghe (RN), Ilse Coomans (engineer), and Erika Van Waerbeke (RN) in the development of TWAH.

Funding

Eva Goossens is funded as Post-Doctoral Researcher, Julie De Backer is funded as Senior Clinical Researcher, and Kristof Vandekerckhove is funded for clinical research (Grant No. 1701418), all by the Research Foundation Flanders. However, the authors have no financial relationships relevant to this article.

Author information

Affiliations

  1. Department of Adult Congenital Heart Disease Ghent, Ghent University Hospital, Corneel Heymanslaan 10, 9000, Ghent, Belgium

    Michèle de Hosson, Julie De Backer & Laurent Demulier

  2. Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium

    Julie De Backer

  3. Research Foundation Flanders (FWO), Brussels, Belgium

    Julie De Backer, Kristof Vandekerckhove & Eva Goossens

  4. Department of Pediatric Cardiology, Ghent University Hospital, Ghent, Belgium

    Daniël De Wolf, Katya De Groote & Kristof Vandekerckhove

  5. Department of Psychology, Ghent University Hospital, Ghent, Belgium

    Saskia Mels

  6. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium

    Eva Goossens

  7. Centre for Research and Innovation in Care (CRIC), Department of Nursing and Midwifery Sciences, University of Antwerp, Antwerp, Belgium

    Eva Goossens

Authors
  1. Michèle de Hosson
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  2. Julie De Backer
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  3. Daniël De Wolf
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  4. Katya De Groote
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  5. Laurent Demulier
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  6. Saskia Mels
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  7. Kristof Vandekerckhove
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  8. Eva Goossens
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Contributions

Michèle de Hosson: This author is the program coordinator of TWAH and drafted the manuscript.

Julie De Backer: This author coordinates the Adult Congenital Heart Disease program. She started transfer clinics with the pediatric cardiologists and is co-designer of TWAH. She critically reviewed the manuscript.

Daniël De Wolf: This author coordinates the Pediatric Congenital Heart Disease program. He is co-designer of TWAH, did an assessment of the methodology and critically reviewed the manuscript.

Katya De Groote: This author participates as a pediatric congenital cardiologist to the transition program and critically reviewed the manuscript.

Laurent Demulier: This author participates as an adult congenital cardiologist to the transition program and critically reviewed the manuscript.

Saskia Mels: This author participates as a pediatric psychologist to the transition program and critically reviewed the manuscript.

Kristof Vandekerckhove: This author participates as a pediatric congenital cardiologist to the transition program and critically reviewed the manuscript.

Eva Goossens: This author with expertise in transitional care and research guided the whole conceptualization of this method paper. She critically reviewed and revised all versions of the manuscript.

Corresponding author

Correspondence to Michèle de Hosson.

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The authors declare that they have no conflict of interest.

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de Hosson, M., De Backer, J., De Wolf, D. et al. Development of a transition program for adolescents with congenital heart disease. Eur J Pediatr 179, 339–348 (2020). https://doi.org/10.1007/s00431-019-03515-4

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  • DOI: https://doi.org/10.1007/s00431-019-03515-4

Keywords

  • Heart defects
  • congenital
  • Transition to adult care
  • Adolescent development
  • Chronic disease
  • Program development