The following are key points to remember from this global consensus statement on transition to adulthood and transfer to adult care of adolescents with congenital heart disease (CHD):

1. The vast majority of children with CHD in high- and middle-income countries survive into adulthood.
2. Transitional care ought to be provided to all adolescents with CHD, taking into consideration the available resources. When reaching adulthood, patients ought to be transferred to adult care facilities/providers capable of managing their needs, and systems have to be in place to make sure that continuity of high-quality care is ensured after leaving pediatric cardiology.
3. There are different models for transition in CHD, each having particular characteristics. The ‘joint clinic model,’ ‘pediatrician-in-adult-care model,’ and ‘introductory model’ are rather ‘transfer models’ because the focus is on handing over the adolescent from pediatrics to adult care, and little room is given to the developmental process that is inherent to transition to adulthood.
4. Alternatively, the ‘transition coordinator model’ is taking the developmental process as the core, accompanies the adolescent in the transition to adulthood, and provides comprehensive transitional care. In this model, the transition is not necessarily stopping when the patient is transferred.
5. Around the age of 12 years, the planned transition process and the transfer policy need to be introduced to the patient and parents/guardian. This introduction can be given during a scheduled outpatient visit or by sending an introduction letter to the parents.
6. As of the age of 14 years, the needs of the adolescent should be comprehensively assessed. The structure of the HEADDDSS psychosocial interview guide for adolescents can be applied. HEADDDSS stands for Home, Education, Activities, Diet, Drugs, Depression, Sex, and Safety.
7. A critical component of transition is that patients and families are introduced to the adult congenital heart disease (ACHD) team, the outpatient clinic, and the flow of an ACHD outpatient visit. This first contact is decisive for successful transfer. Such an introduction can be done by a guided visit at the ACHD outpatient clinic, a personal meeting with the ACHD team, a brochure/flyer, or a virtual presentation on slides or video.
8. Working collaboratively with CHD specialists, primary care providers are in a unique position to provide care across the age span and be a consistent presence for the patients as they leave pediatric care and enter the adult-oriented healthcare system. They can also ensure successful transfer and retention in ACHD care by monitoring ACHD clinic attendance.
9. A written transition policy should set out principles, standards, and practices of how the transition is managed at the center and incorporate: a) management agreements between pediatric and ACHD care, b) description of patient population and criteria of inclusion, c) intensity of transition intervention, d) family inclusion, e) competencies of staff, f) teaching aids, g) liaison with schools and comprehensive disability services for those in need, h) possibilities for telehealth, i) billing, and j) monitoring systems.
10. Transitional care and the transfer to adult care settings are critical for all adolescents with CHD. Available resources will determine which components of transition programs can be implemented, and who will be able to perform this. Regardless, systems must be in place to ensure that continuity of care is ensured after leaving pediatric cardiology care.

Clinical Topics: Cardiovascular Care Team, Congenital Heart Disease and Pediatric Cardiology, Prevention, Congenital Heart Disease, CHD and Pediatrics and Arrhythmias, CHD and Pediatrics and Prevention, CHD and Pediatrics and Quality Improvement, Diet

Keywords: Adolescent, Adult, Ambulatory Care Facilities, Child, Delivery of Health Care, Depression, Diet, Heart Defects, Congenital, Outpatients, Parent-Child Relations, Pediatrics, Primary Prevention, Telemedicine, Transition to Adult Care

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