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Evaluation of an active population-based surveillance system for major birth defects in South Carolina
Marsha E Samson1,2, Vinita Leedom3, Cara T Mai1
1National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC), Atlanta, Georgia, USA.
Insights
The South Carolina Birth Defects Program (SCBDP) effectively monitors birth defects using active surveillance. Its data collection methods ensure timely, complete, and accurate information for public health action.
Area of Science:
- Public Health Surveillance
- Pediatric Epidemiology
- Reproductive Health
Background:
- Birth defects are a significant cause of infant mortality and morbidity.
- Effective monitoring systems are crucial for understanding and mitigating the impact of birth defects.
- The South Carolina Birth Defects Program (SCBDP) conducts population-based surveillance for major birth defects.
Purpose of the Study:
- To evaluate the system attributes of the South Carolina Birth Defects Program (SCBDP).
- To assess the timeliness, completeness, and accuracy of birth defects data collected by SCBDP.
- To ensure the program adheres to established public health surveillance guidelines.
Main Methods:
- Reviewed SCBDP reports, program materials, and meeting minutes.
- Conducted interviews with program staff and stakeholders (n=10).
- Calculated the percentage of birth defects cases identified within six months of the birth cohort year (2016-2018).
Main Results:
- SCBDP identifies 900-1,200 birth defects cases annually from approximately 55,000 live births.
- Active case review of medical records by trained staff ensures data quality and completeness.
- The program achieves 97.1% timeliness in case identification within six months post-cohort year.
Conclusions:
- SCBDP's active surveillance and data quality practices yield timely, complete, and accurate birth defects data.
- This robust data supports understanding the impact of birth defects and informs public health interventions.
- The program's methods are effective for monitoring major birth defects statewide.
Introduction:
Birth defects are common, costly, and contribute substantially to infant mortality. The South Carolina Birth Defects Program (SCBDP) employs active population-based surveillance to monitor major birth defects statewide. We evaluated SCBDP's system attributes using published CDC guidelines.
Methods:
To determine timeliness, completeness, and accuracy of birth defects information, we examined SCBDP's reports, program and education materials, advisory group meeting minutes, and strategic plan. We also met with program staff and stakeholders (n = 10) to discuss program goals and data utilization. We calculated the percentage of birth defects cases found 6 months after a birth cohort year for 2016-2018.
Results:
SCBDP identifies 900-1,200 birth defects cases for a birth population of approximately 55,000 live births annually through active case reviews. SCBDP uses trained medical staff to abstract detailed information from maternal and infant medical records; SCBDP also has established auto-linkage with state vital statistics to capture demographic and birth data. SCBDP is timely and captures 97.1% (range 96.7-97.6%) of birth defects cases within 6 months after the birth cohort year closes. Active case identification using medical records as the primary data source improves quality assurance and completeness, while prepopulating demographic information improves timeliness.
Conclusions:
Given that birth defects significantly contribute to infant morbidity and mortality, monitoring these conditions is important to understand their impact on communities and to drive public health actions. SCBDP active surveillance and rigorous data quality practices provide the program with timely, complete, and accurate birth defects data.
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