Congenital heart disease clinics — How to keep the adult patients on board

The steadily growing number of adults with congenital heart disease has led with some delay to an increase of specialized programs dedicated to the care of these patients. Still, in many countries the prevalence of congenital heart disease in adults is not known, nor the number of adults requiring specialized care. By extrapolating the results of epidemiological studies on the population in Europe and North America, only half or even less of all adults with moderate or complex congenital heart disease is currently under follow-up in specialized centers. Lapse of appropriate medical care in adults with congenital heart disease is associated with unnecessary morbidity and an increased likelihood of the need for urgent interventions. In order to improve medical care for adults with moderate or complex congenital heart disease, the number of patients with specialized follow-up in congenital cardiac clinics has to increase. One approach is to avoid lapses of care in patients already followed by a pediatric or adult congenital heart disease center. Therefore, congenital heart disease clinics should try to identify among their patients the ones at risk for lost to follow-up, and focus some of their efforts on measures to increase the awareness for life-long medical care among these patients. Characteristics of the adult congenital cardiac patient at high risk of inappropriate medical follow-up include having few interventions in early life despite a complex cardiac defect, being born in an earlier decade, receiving no specific follow-up recommendations, and having no education about defect- or surgery-related sequelae or residual lesions. Implementation of a structured transition program, teaching patients about their heart defect and the consequences of repair or palliation in earlier life, establishing a continuity of care within the congenital cardiac clinic, optimizing organization and communication between different care-givers, and encouraging patients to play an active role regarding their personal health care, are some of the recommendations on how we should try to avoid another generation of adult congenital heart disease patients from being lost to follow-up.