Abstract 18605: Long-Term Cardiac Follow-up of Patients With Severe Congenital Heart Disease: Are Care Gaps Associaed With an Increased Probability of Mortality
Introduction: The ACC/AHA 2008 guidelines for adults with congenital heart disease (CHD) recommend follow-up in patients with severe CHD at specialized centers every 6-12 months. Care gaps, however, are prevalent in adolescents transitioning to adulthood. Studies investigating CHD surveillance in adults are currently lacking. Furthermore, an assessment of the impact of care gaps on mortality is lacking. We investigated CHD outpatient visit rates in patients with severe CHD aged 12-65y. The probability of mortality was assessed in 3 groups (i.e., lost to follow-up, care gaps, surveillance at least yearly) stratified by age. We hypothesized that care gaps are most prevalent in adolescents and that patients with no or discontinued care, have an increased probability of mortality.
Methods: A cohort study was performed on the Québec CHD database. Patients with severe CHD, 12-65y between 2001-2010, were selected (n=4,713). The mean number of CHD outpatient visits was calculated. Based on this number, patients were subdivided in 3 groups stratified by age. Group1 represented patients without outpatient CHD visits (i.e., lost to follow-up). Group2 comprised patients who had CHD visits less than annually (i.e., care gaps). Finally, patients who had cardiac surveillance visits at least yearly were in line with recommendations.
Results: The proportion of patients lost to follow-up increased significantly with age (χ2=50.769; p<0.001). Care gaps were most prevalent in patients aged 25-40y. Mortality risks for group 1,2 and 3 were 0.33%, 0.74% and 0.68% in patients aged 12-24y; 0.90%, 0.53% and 1.65% for 25-40y; and 3.59%; 0.56%, 3.17% for 41-65y. The mortality risk did not differ significantly across groups.
Conclusions: Care gaps were most prevalent in adults (25-40y). Increased probability of mortality in patients with discontinued care was not demonstrated. Additional analyses are required to investigate if groups differ in service seeking behaviors and comorbidities.
Author Disclosures: E. Goossens: None. A. Liu: None. L. Guo: None. S. Cohen: None. J. Therrien: None. P. Moons: None. A. Marelli: None.
- © 2016 by American Heart Association, Inc.