Evaluating the concerns of pregnant women with epilepsy: a focus group approach

Some women with epilepsy stop or decrease their antiepileptic drug (AED) therapy during pregnancy because they fear fetal effects of the therapy. This places the patient and her fetus at risk for potential adverse outcomes due to increased seizure activity. The rationale of this behavior is not completely understood and is underexplored. The aim of this qualitative project was to determine the concerns of pregnant women with epilepsy via small focus groups.

Pregnant women with epilepsy were recruited to participate in small group sessions involving direct interviews which were analyzed by thematic content analysis.

Ten focus groups were conducted with a total of 21 second or third trimester pregnant women with epilepsy. Twelve women reported changes to their AED regimen during pregnancy, with six having made changes requested by their prescriber and six (29% of all study participants) self-altering their AED regimen. In contrast to the former group, the alterations made by the latter group were either dose-lowering or stopping AEDs altogether. Via content analysis, four pregnancy specific patient-related concerns arose: 1) the safety of drug therapy during pregnancy, 2) potential neonatal complications, 3) labor and delivery issues and 4) neonatal and post-partum management. An unanticipated benefit was the fostering of patient comfort and an opportunity for patient-to-patient collaboration.

Our study adds insight into the concerns of pregnant women with epilepsy. By identifying these concerns, we may be able to provide more effective patient education, and we hope to ultimately improve outcomes in women with epilepsy.