title: Implementation of transition programs can prevent another lost generation of patients with congenital heart disease.
abstract: Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.
authors.affiliation: Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium. Philip.Moons@med.kuleuven.be
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
authors.forename: Deborah
authors.initials: D
authors.lastname: Hilderson
authors.forename: Kristien
authors.initials: K
authors.lastname: Van Deyk
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare / Q000458:organization & administration*; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration*; D006301:Health Services Needs and Demand; D006330:Heart Defects, Congenital / Q000150:complications / Q000453:epidemiology / Q000517:prevention & control*; D006801:Humans; D008136:Longevity; D009017:Morbidity; D010353:Patient Education as Topic / Q000458:organization & administration*; D016730:Program Development; D016896:Treatment Outcome