Abstracts

Rationale: Through a multi-year collaboration with the Medical Center s Maternal-Fetal Medicine program, the Comprehensive Epilepsy program works closely with pregnant women with epilepsy. We have observed over the last 7 years that some women stop or decrease their antiepileptic drug therapy during pregnancy because they fear fetal effects of therapy. This places the woman and her developing fetus at risk for adverse outcome due to increased seizure activity. The rationale of this behavior is not completely understood. The aim of this qualitative project was to determine the concerns of pregnant women with epilepsy via small focus groups where they were interviewed directly. Methods: Pregnant women with epilepsy were recruited at their routine visits at either the High-Risk Obstetrics Clinic or the Epilepsy Clinic. The 60 to 90 minute sessions were held in collaboration with the Epilepsy Foundation of Central Ohio Social Worker. We conducted 10 separate focus groups over 33 months. Results: We conducted multiple, asynchronous focus groups with a total of 21 second or third trimester pregnant women. The mean age of the participants was 27.5 ( 5.3) years; with a mean duration of epilepsy of 10 years. Most women (n=16, 76%) had experienced generalized tonic-clonic seizures. Eleven women (52%) reported seizures within the past 6 months; including 4 women with seizures within the 30 days prior to the focus group. Seventeen women (81%) were prescribed antiepileptic drug monotherapy; with the remaining 4 on polytherapy. Twelve of the 21 pregnancies were unplanned. This was the first pregnancy for seven women. Nine women (43%) reported taking folic acid before they became pregnant. Twelve women reported changes to their antiepileptic drug regimen during pregnancy, six of whom had changes made by their prescriber. Of particular interest, six women (29% of all study participants) self-altered their antiepileptic drug regimen during their pregnancy. All six of the patient-made alterations were either dose-lowering or stopping antiepileptic drug therapy altogether. Specific concerns that were raised by the participants during the focus groups included: 1) the safety of antiepileptic therapy during pregnancy, 2) potential neonatal complications including inheritance of epilepsy, 3) neonatal management and 4) labor and delivery issues. Additional concerns included the ability to safely operate a motor vehicle and educating their families and children about epilepsy, especially how to respond in the event of a seizure. An unanticipated benefit of these sessions included fostering patient comfort and an opportunity for patient-to-patient teaching and collaboration. Conclusions: We believe our study adds insight to the concerns of pregnant women with epilepsy. By identifying these concerns, we are able to be more directed in our approach to patient education and ultimately improve outcomes in women with epilepsy.