Improving Surveillance for the Hidden Half of Fetal-Infant Mortality Open Access

Christiansen-Lindquist, Lauren (2015)

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Stillbirths, defined as the death of a fetus of at least 20 weeks' gestation, devastate and forever change the lives of the 26,000 families who endure them annually in the United States. Despite a similar annual prevalence as infant mortality, far fewer resources are allocated to understanding and preventing stillbirths. Vital statistics, the only source of national stillbirth data, are limited due to underreporting and poor data quality. To date, there have been no multi-site population-based estimates of stillbirth incidence in the US, and it is unknown whether fetal death certificate (FDC) data quality varies by maternal and delivery characteristics. Additionally, it is unclear whether FDC reporting of gestational age represents age at death or delivery. We addressed these gaps using the Stillbirth Collaborative Research Network's (SCRN) multi-site, population-based, case-control study of stillbirth. SCRN stillbirths enrolled in DeKalb County, GA and Salt Lake County, UT were linked to FDCs. To estimate the incidence of stillbirth among residents of DeKalb and Salt Lake Counties, we compared SCRN- and FDC-identified stillbirths using capture-recapture methods. Estimates using SCRN and FDC data were higher than those obtained by FDCs alone for both counties; this difference was more striking for DeKalb than for Salt Lake County. The second study described the completeness and accuracy of the FDC among SCRN enrollees in DeKalb and Salt Lake Counties with a linked FDC, using SCRN as the gold standard. Data quality varied by FDC item and county of residence, and, with few exceptions, was not associated with maternal and delivery characteristics. The final study compared gestational age reported on the FDC to SCRN's estimate of gestational age at death. The FDC did not provide a good estimate of the gestational age at death for most stillbirths. The difference between these values was not associated with the timing of the stillbirth relative to labor initiation or county of residence, which suggests that dating of all stillbirths needs improvement. Taken together, these studies demonstrate the need for improvement of stillbirth surveillance and provide a better description of the limitations of these data than was previously available.

Table of Contents

Chapter 1: Introduction. 1

Chapter 2: Stillbirth in the United States. 2

Chapter 3: Vital Statistics for Stillbirth - Fetal Death Certificate Data Quality. 7

Chapter 4: Stillbirth Collaborative Research Network. 16

Chapter 5: Using Capture-Recapture Methods to Obtain a Geographical Population-Based Estimate of the Incidence of Stillbirth in Two US Counties. 19

Chapter 6: A Descriptive Study of the Completeness and Accuracy of the Fetal Death Certificate. 43

Chapter 7: Does Gestational Age Reported on the Fetal Death Certificate Provide an Estimate of the Gestational Age at Death?. 66

Chapter 8: Conclusion. 81

References. 86

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