Background: Despite high infant mortality rates in the United States relative to other developed countries, little is known about survey participation among mothers of deceased infants. Objective: To assess differences in survey response, contact and cooperation rates for mothers of deceased versus. living infants at the time of survey mailing (approximately 2–6 months postpartum), overall and by select maternal and infant characteristics. Methods: We analysed 2016–2019 data for 50 sites from the Pregnancy Risk Assessment Monitoring System (PRAMS), a site-specific, population-based surveillance system of mothers with a recent live birth. We assessed differences in survey participation between mothers of deceased and living infants. Using American Association for Public Opinion Research (AAPOR) standard definitions and terminology, we calculated proportions of mothers who participated and were successfully contacted among sampled mothers (weighted response and contact rates, respectively), and who participated among contacted mothers (weighted cooperation rate). We then constructed multivariable survey-weighted logistic regression models to examine the adjusted association between infant vital status and weighted response, contact and cooperation rates, within strata of maternal and infant characteristics. Results: Among sampled mothers, 0.3% (weighted percentage, n = 2795) of infants had records indicating they were deceased at the time of survey mailing and 99.7% (weighted percentage, n = 344,379) did not. Mothers of deceased infants had lower unadjusted weighted response (48.3% vs. 56.2%), contact (67.9% vs. 74.3%) and co-operation rates (71.1% vs. 75.6%). However, after adjusting for covariates, differences in survey participation by infant vital status were reduced. Conclusions: After covariate adjustment, differences in PRAMS participation rates were attenuated. However, participation rates among mothers of deceased infants remain two to four percentage points lower compared with mothers of living infants. Strategies to increase PRAMS participation could inform knowledge about experiences and behaviours before, during and shortly after pregnancy to help reduce infant mortality.

Purpose: Describe the relative frequency and joint effect of missing and misreported fetal death certificate (FDC) data and identify variations by key characteristics. Methods: Stillbirths were prospectively identified during 2006-2008 for a multisite population-based case-control study. For this study, eligible mothers of stillbirths were not incarcerated residents of DeKalb County, Georgia, or Salt Lake County, Utah, aged ≥13 years, with an identifiable FDC. We identified the frequency of missing and misreported (any departure from the study value) FDC data by county, race/ethnicity, gestational age, and whether the stillbirth was antepartum or intrapartum. Results: Data quality varied by item and was highest in Salt Lake County. Reporting was generally not associated with maternal or delivery characteristics. Reasons for poor data quality varied by item in DeKalb County: some items were frequently missing and misreported; however, others were of poor quality due to either missing or misreported data. Conclusions: FDC data suffer from missing and inaccurate data, with variations by item and county. Salt Lake County data illustrate that high quality reporting is attainable. The overall quality of reporting must be improved to support consequential epidemiologic analyses for stillbirth, and improvement efforts should be tailored to the needs of each jurisdiction.

Purpose: In the United States, stillbirths (fetal deaths ≥ 20 weeks' gestation) are now more common than infant deaths. Nationally available data are limited, and little is known about women's experiences around the time of a loss. The Pregnancy Risk Assessment Monitoring System (PRAMS), a state-based survey of women with a recent live birth, could be expanded to include women who experienced a stillbirth. We aimed to determine whether women with a recent stillbirth would be amenable to a PRAMS-like survey. Methods: Eligible women were Georgia residents aged ≥18 years with a reported stillbirth from December 1, 2012-February 28, 2013 identified through fetal death certificates. Women received a handwritten sympathy card, followed by a mailed questionnaire about their health and experiences around the time of the loss. Nonresponders received two additional mailings and up to three phone calls. Results: During the study period, 149 eligible women had a reported stillbirth. Forty-nine (33%) women responded. Excluding women with invalid contact information (n = 26) yields an adjusted response rate of 40%. Response differed by race and/or ethnicity, but not by fetal, delivery, or other maternal characteristics. Conclusions: Women appear willing to respond to a survey regarding a recent stillbirth. Further studies of the expansion of PRAMS to include stillbirth are warranted.