Perceptions of reproductive risk among women with epilepsy of childbearing age

Background: Having children or planning to have children may raise many questions for women with epilepsy. Seizures and antiseizure medications (ASMs) impact contraception, fetal/early childhood development, and maternal health. Little is known regarding patients' perspectives about reproductive risk and how those perspectives influence reproductive decision-making. Methods: As a quality improvement initiative, we distributed an electronic survey within our health system to women ages 21-45 with a primary diagnosis of epilepsy/seizures. We then performed an exploratory research study to investigate perceptions of risk of epilepsy and ASMs on reproductive health and decision making. Additionally, we looked at clinical characteristics as possible predictors of fear impacting reproductive decisions. Results: There were 267 responses (32% responder rate); after exclusion criteria, 233 respondents were included in the study. There were mixed responses about how fear of ASM teratogenicity impacted decisions about having children (33% very much, 34% a little, 33% not at all). While 45% responded that fear of having a child with epilepsy/seizures did not at all affect decisions about having children, for 24% this very much affected their decision. In total 42% of respondents reported they had had children. When we evaluated the impact of certain clinical characteristics, we found ASM number and valproic acid use impacted reproductive decision making, while other expected characteristics (e.g., drug-refractoriness and convulsive seizures) did not. Discussion: We found variation in perceptions of risk. Overall, our data support the very personalized nature of preferences and the need for individualized counseling when guiding patients in reproductive decision making.