title: Age at referral and mortality from critical congenital heart disease.
abstract: OBJECTIVE
  Newborn pulse oximetry screening is recommended to promote early referral of neonates with critical congenital heart disease (CCHD) and reduce mortality; however, the impact of late referral on mortality is not well defined. The purpose of this population-based study was to describe the association between timing of referral to a cardiac center and mortality in 2360 liveborn neonates with CCHD.
  
  
  METHODS
  Neonates with CCHD born before pulse oximetry screening (1996-2007) were selected from the Texas Birth Defects Registry and linked to state birth and death records. Age at referral was ascertained from date of first cardiac procedure at a cardiac center. Logistic and Cox proportional hazards regression models were used to estimate factors associated with late referral and mortality; the Kaplan-Meier method was used to estimate 3-month survival.
  
  
  RESULTS
  Median age at referral was 1 day (25th-75th percentile: 0-6 days). Overall, 27.5% (649 of 2360) were referred after age 4 days and 7.5% (178 of 2360) had no record of referral. Neonatal mortality was 18.1% (277 of 1533) for those referred at 0 to 4 days of age, 9.0% (34 of 379) for those referred at 5 to 27 days of age, and 38.8% (69 of 178) for those with no referral. No improvement in age at referral was found across the 2 eras within 1996-2007.
  
  
  CONCLUSIONS
  A significant proportion of neonates with CCHD experienced late or no referral to cardiac specialty centers, accounting for a significant number of the deaths. Future population-based studies are needed to determine the benefit of pulse oximetry screening on mortality and morbidity.
authors: Division of Pediatric Cardiology, Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, Texas; david.fixler@childrens.com.
authors: David E
authors: DE
authors: Fixler
authors: Department of Epidemiology and Biostatistics, College of Public Health, University of South Florida, Tampa, Florida; and.
authors: Ping
authors: P
authors: Xu
authors: Department of Epidemiology and Biostatistics, College of Public Health, University of South Florida, Tampa, Florida; and.
authors: Wendy N
authors: WN
authors: Nembhard
authors: Birth Defects Epidemiology and Surveillance Branch, Texas Department of State Health Services, Austin, Texas.
authors: Mary K
authors: MK
authors: Ethen
authors: Birth Defects Epidemiology and Surveillance Branch, Texas Department of State Health Services, Austin, Texas.
authors: Mark A
authors: MA
authors: Canfield
mesh_terms: D000367:Age Factors; D016638:Critical Illness; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000401:mortality*; D006331:Heart Diseases / Q000151:congenital* / Q000175:diagnosis / Q000401:mortality*; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D010092:Oximetry; D012017:Referral and Consultation / Q000706:statistics & numerical data*
keywords: congenital heart disease; epidemiology; health policy and outcome research; neonatal mortality