Abstract 15203: Long Term Survival After Surgical or Transcatheter Interventions for Congenital Heart Disease (CHD): A Study From the Pediatric Cardiac Care Consortium (PCCC)
Introduction: We aim to study long term survival in the cohort registered in the PCCC after surviving interventions for CHD between 1982 and 2003. The PCCC is the longest standing registry of outcomes for pediatric cardiac interventions in the world containing data from surgical and trans-catheter procedures from 48 centers in 27 U.S. states.
Methods: We linked the PCCC dataset with the National Death Index (NDI) using direct identifiers to determine long term vital status of individuals with repaired or palliated CHD. The identifiers included first name (when available), middle name (when available), last name, birth date, state of last residence, and sex. A total of 54,667 subjects (47.6% female) were registered prior to April 15, 2003 (date of implementation of stricter HIPAA rules) in the PCCC as survivors after undergoing an intervention for CHD and were submitted for linkage with the NDI. The standardized mortality ratio and one-sample log-rank test were computed by matching age, sex, and year to mortality tables from the Centers for Disease Control and Prevention (CDC WONDER data). A Kaplan Meier (KM) plot was created for the PCCC cohort along with survival curves for the standard population.
Results: A total of 4,690 deaths (8.6%) were identified after the last PCCC contact (median follow-up: 17.0 years [range: 1 day - 33.0 years]) vs 736 expected (1.3%). The standardized mortality ratio was 6.37 (95% CI: 6.17-6.59, p<0.001) (Figure A). Females had a higher mortality ratio compared to the general population, 6.78 (95% CI: 6.44-7.13) versus 6.12 for males (95% CI: 5.86-6.39) (Figure B).
Conclusions: Survivors with repaired or palliated congenital heart disease have a significantly higher mortality ratio than the general population. Additional in depth analysis of risk factors for long term outcomes and causes of death by group of conditions and specific diagnoses is underway.
- Congenital heart disease
- Congenital heart surgery, pediatric
- Congenital heart surgery, adult
- Pediatric cardiology
Author Disclosures: L. Kochilas: Consultant/Advisory Board; Modest; Novartis. J. Menk: None. J.M. Vinocur: None. B. Harvey: None. M. Oster: None. J. St Louis: None. L. Spector: None.
- © 2016 by American Heart Association, Inc.