Expanding the Massachusetts Birth Defects Monitoring Program to include additional pregnancy outcomes: Programmatic efforts and impacts on case ascertainment, 2012–2020
Amy Fothergill, Rebecca F. Liberman, Eirini Nestoridi, Cara T. Mai, Lorraine F. Yeung, Cathleen Higgins, Mahsa M. Yazdy- Health, Toxicology and Mutagenesis
- Developmental Biology
- Toxicology
- Embryology
- Pediatrics, Perinatology and Child Health
Abstract
Background
Birth defects affect 1 in 33 infants in the United States and are a leading cause of infant mortality. Birth defects surveillance is crucial for informing public health action. The Massachusetts Birth Defects Monitoring Program (MBDMP) began collecting other pregnancy losses (OPLs) in 2011, including miscarriages (<20 weeks gestation) or elective terminations (any gestational age), in addition to live births and stillbirths (≥20 weeks gestation). We describe programmatic changes for adding OPLs and their impact on prevalence estimates.
Methods
Using population‐based, statewide, data from the MBDMP (2012–2020), we assessed prevalence per 10,000 live births and 95% confidence intervals (CIs) with and without OPLs overall and for specific birth defects by time period, maternal age, and race/ethnicity.
Results
Including OPLs required amending a state statute and promulgating regulations, new data sources, and additional data processing, cleaning, and verification. Overall prevalence with OPLs increased from 257.4 (95% CI: 253.5–261.4) to 333.9 (95% CI: 329.4–338.4) per 10,000; increases were observed in all time periods, age, and race/ethnicity groups. After including OPLs, the prevalence increased for neural tube defects [3.2 (2.7–3.6) to 8.3 (7.6–9.0)], and trisomies 13 [0.5 (0.3–0.7) to 4.1 (3.6–4.6)], 18 [1.5 (1.2–1.9) to 8.2 (7.5–8.9)], and 21 [12.3 (11.4–13.2) to 28.9 (27.6–30.2)]. Cardiovascular defects increased slightly, while prevalence of eye/ear, respiratory, and gastrointestinal defects remained similar.
Conclusions
Adding OPLs required substantial programmatic efforts and resulted in more complete case ascertainment, particularly for certain birth defects. More complete case ascertainment will allow for improved research, screening, and resource allocation.