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Transition in congenital heart disease: it takes a village
  1. M Gurvitz1,
  2. A Saidi2
  1. 1Department of Cardiology, Boston Children's Hospital, Boston, Massachusetts, USA
  2. 2Departments of Pediatrics and Internal Medicine, University of Florida, Gainesville, Florida, USA
  1. Correspondence to Dr M Gurvitz, Department of Cardiology, Boston Children's Hospital, Boston, 02115, Massachusetts, USA; Michelle.Gurvitz{at}cardio.chboston.org

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The world of congenital heart disease (CHD) is evolving at a rapid pace. Patients are not only surviving longer but many are surviving healthier and are anticipated to live long and productive lives into adulthood. With the tremendous advances in cardiology and cardiac surgery, the field is no longer just about ‘blue babies’ and struggling to survive past an operation, but rather about how to move successfully into and through adulthood. Current estimates suggest that adult survivors with CHD now outnumber children with CHD in the USA. The faces of patients with CHD are changing and guidance and practices must change with it.

Transition is defined as “movement, passage, or change from one position, state, stage, subject, concept, etc., to another” (http://dictionary.reference.com/browse/transition). For congenital heart patients and providers, the process of transitioning patients to adulthood and adult-oriented care involves many facets of both medical and psychosocial care. Transition in CHD does not necessarily mean a change in physician, but rather a change in the approach to medical care by the patient and the provider and the knowledge and skills to adapt to these changes. The process often requires a shift from paediatric family-centred care to adult patient-centred care and patients learning new strategies for managing health, coping with medical decision making and facing morbidity and possibly early mortality. The process also involves educational and vocational transition to appropriately prepare for a productive adulthood. Most children will accomplish a transition to adulthood and achieve independence at some point in their lives. For children with chronic medical conditions, this is equally, if not more, important because poor transitions and gaps in care have been associated with late medical concerns.1–3

Consequences from poor transitions or gaps in care that can affect patients and the medical system include increased morbidity, emotional stress and …

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