Canadian Journal of Cardiology



      Over 90% of children with congenital heart disease (CHD) reach adulthood. Many of these individuals require lifelong cardiology care. Loss to follow-up predisposes patients to late recognition of cardiac complications. However, whether or not a young adult attends an ACHD clinic is a crude outcome variable. Rather, the time between the final pediatric visit and the first ACHD visit, over and above what was recommended by the referring pediatric cardiologist, is a variable that captures not only whether a patient was seen in an ACHD clinic but also the time delay, if any, in arriving there. Predictors of high excess time are unknown. Therefore, we sought to describe the excess time to ACHD care and determine risk factors for elevated excess time.

      Methods and Results

      We conducted a retrospective cohort study including all patients with moderate or complex CHD who were 16-18 years of age at their last pediatric cardiology visit at the Alberta Children’s Hospital or Stollery Children’s Hospital. We excluded patients known to have relocated outside the catchment area of a study site, or having had a heart transplant. Medical records of the pediatric site and corresponding ACHD clinic were reviewed to determine appointment dates and clinical factors. Excess time between pediatric and ACHD care was defined as the time interval in months between the final pediatric visit and the first ACHD visit, minus the recommended time interval between these visits. Patients who had their first ACHD appointment earlier than the recommended time were assigned an index time of 0. Two hundred and eight-six patients (66% male, mean age 17.6 years at last pediatric appointment) were included of whom 29 (10%) had an index time >24 months. Mean excess time was 7.9 ±15.9 months. On logistic regression, having a pacemaker was protective from excess time > 3 months (p=0.03) as was a history of cardiac medication use at the last pediatric appointment (p=0.02). Excess time was not influenced by CHD complexity (moderate vs. severe/complex).


      The mean delay to first ACHD appointment, beyond the interval recommended by the pediatric cardiologist, was almost 8 months. Having a pacemaker or use of cardiac medication were protective from excess time > 3 months. These findings suggest that greater outpatient resources are required to accommodate the growing number of ACHD survivors.