Lapse of care as a predictor for morbidity in adults with congenital heart disease

Background: There is a need for timely transition of patients with congenital heart disease who have reached adulthood. While the American Heart Association guidelines dictate that patients with moderate or great complexity lesions be seen at least every 2 years, lapse in care is common. We sought to assess the frequency and clinical impact of lapse of medical care in adults with moderate or great complexity cardiac lesions diagnosed in childhood. Methods: All patients, fulfilling the above criteria, who were seen in an Adult Congenital Heart Disease regional clinic from 2002 to 2005 were questioned as to the length of time from leaving care at a pediatric institution to establishment of subsequent cardiac care. Lapse of medical care, defined as ≥ 2 year interval from leaving a pediatric cardiac care facility, was determined. Variables associated with lapse of medical care were sought. Variables associated with adverse outcome were identified. Results: Of 400 patients seen, 158 met inclusion criteria. Of these, lapse of medical care was present in 99 (63%) with a median duration of lapse of medical care of 10 (2-50 years). The most common reason cited for lapse of medical care was that the patient was told there was no need for follow-up (32%). Patients with lapse of medical care were 3.1×(p = 0.003) more likely to require urgent cardiac intervention (p = 0.003). Conclusions: Lapse of medical care is common in adults with congenital heart disease and is associated with adverse outcome.