Improving surveillance for the hidden half of fetal-infant mortality: a pilot study of the expansion of the Pregnancy Risk Assessment Monitoring System to include stillbirth.

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.