Development of a transition program for adolescents with congenital heart disease
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.
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.
KeywordsHeart defects congenital Transition to adult care Adolescent development Chronic disease Program development
Congenital heart disease
Individual transition plan
Leuven Knowledge Questionnaire for Congenital Heart Disease
On your own feet
Pediatric Quality of Life inventory
Transition Readiness Assessment Questionnaire
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.
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.
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.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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