Data Element

Information from the submission form

Pregnancy Outcome
Description

The result of the subject’s delivery, such as live birth or not a live birth.

Comment

Standards and value sets need more granularity

There are multiple value sets on VSAC that represent Pregnancy Outcome with more detail that is not on PhenX
  1. Pregnancy ending in delivery
  2. Pregnancy with abortive outcome
Recommend more specificity to make this information actionable by clinicians.

CDC's Consolidated Comment

  • STD - Congenital syphilis: this is very important because if pregnancy unfortunately ends in a still birth, the female should be screened for syphilis. This is part of current recommendations for stillbirth but is not followed routinely, estimates are that only about 60% get screened. 
CSTE Comment:
  • CSTE strongly recommends that pregnancy status be included in USCDI v3. However, a single variable is not sufficient to capture critical data that is needed for a large variety of conditions affecting the public's health, including maternal mortality, Hepatitis B and C, COVID-19, Zika, syphilis, and influenza, to name only a few. CSTE urges the inclusion of the following variables in the core data  for exchange - as defined by the ONC Public Health Task Force on Capturing Pregnancy Data in Electronic Health Records and found here: https://www.healthit.gov/sites/default/files/facas/HITJC_PHTF_Meeting_Slides_2017-03-30_0.pdf
  1. Pregnancy Status - Yes, No, Possible, Unknown
  2. Date pregnancy status recorded
  3. Estimated delivery date
  4. Pregnancy outcome
  5. Date of pregnancy outcome and optionally
  6. Postpartum status (this is important since if the mother recently gave birth and is diagnosed with a condition that could affect the neonate, public health action might be indicated).
 
  • Currently there are large gaps in the ability for data from electronic health records or ELR to capture sufficient pregnancy information to identify cases and measure the burden and outcome of medical conditions and infections in pregnancy on a population level. Standardizing these data for exchange would be a substantial step forward.
  • Finally, it is very important for electronic health records to develop a way to link the mother and infant records. A unique identifier for the mother which can be included in the infant's record, and a similar unique identifier for the infant which can be included in the mother's records would help to rectify this problem, which would be beneficial for both clinical care as well for public health when we receive data on mothers and infants but cannot link them (important for diseases such as listeria, Zika, syphilis, Hepatitis B, and others)

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