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Using State Birth Defects Registries to Evaluate Regional Critical Congenital Heart Disease Newborn Screening
Amy Peterson Case1, Stephanie D Miller2, Monica R McClain3
1Consortium for Independent Research, Vancouver, Washington.
Insights
State birth defects registries can track critical congenital heart disease (CCHD) screening outcomes. However, inconsistent data recording impacts the evaluation of CCHD screening effectiveness and infant health services use.
Area of Science:
- Public Health
- Pediatric Cardiology
- Medical Informatics
Background:
- Mandatory pulse oximetry screening for newborns is increasingly adopted by states.
- State-based birth defects registries are crucial for monitoring critical congenital heart disease (CCHD) screening.
- Evaluating screening coverage and outcomes requires robust data collection.
Purpose of the Study:
- To determine the proportion of critical congenital heart disease (CCHD) cases detected by newborn screening.
- To analyze health services utilization by infants with CCHDs in their first year of life.
- To assess mortality outcomes for infants diagnosed with CCHDs.
Main Methods:
- Utilized New England birth defects databases to identify infants born in 2012-2013 with specific CCHD lesions.
- Extracted data from medical records for analysis.
- Employed descriptive statistics to report findings on screening, health services, and outcomes.
Main Results:
- Out of nearly 160,000 live births, 157 infants had 208 CCHD diagnoses.
- Screening was documented in 67% of confirmed CCHD cases.
- One-year survival rate was 85%; data completeness varied significantly by state surveillance methods (active vs. passive).
Conclusions:
- Birth defects surveillance systems offer valuable insights into CCHD outcomes.
- Variability in surveillance methods and hospital practices affects data quality.
- Standardizing recording procedures and enhancing training are essential to improve the utility of registries for CCHD screening assessment.
Background:
Most states have now passed legislation mandating pulse oximetry for all newborns, or have promulgated regulations or guidelines to encourage use of routine pulse oximetry. State-based birth defects registries may be well positioned to track and evaluate critical congenital heart disease (CCHD) screening coverage and outcomes. This purpose of this study was to determine: (1) the proportion of cases detected by screening, (2) health services use by children with CCHDs during the first year of life, and (3) mortality outcomes.
Methods:
Records of children born in 2012 to 2013 with any of seven CCHD lesions were identified in New England birth defects databases. Information was abstracted from each child's medical record. Descriptive statistics were used to report results.
Results:
From nearly 160,000 live births, 208 CCHD diagnoses were noted in the records of 157 children. Screening was noted in 67% of records of confirmed cases of CCHDs. Data completeness varied by state; for example, information was available regarding prenatal diagnosis in 91% of records and age at first surgery in 85% among states with active surveillance compared with 35% and 75%, respectively, with passive surveillance. Documentation of screening results in medical records was inconsistent. The one year survival was 85% (77/91).
Conclusion:
Birth defects surveillance systems can provide information on outcomes for infants with CCHDs. However, information varies by surveillance method and by hospital practices. Engaging hospitals in standardizing recording procedures and enhancing training and quality control could increase the value of birth defects registries records in assessing outcomes for children identified through CCHD screening. Birth Defects Research 109:1414-1422, 2017.© 2017 Wiley Periodicals, Inc.
