Management of Women with Epilepsy: Are Guidelines Being Followed? Results from Case‐note Reviews and a Patient Questionnaire

Abstract

Several international guidelines for the management of women with epilepsy (WWE) have been developed since 1989. We aimed to determine whether guidelines for the management of WWE are followed and whether active implementation of such guidelines makes a difference to clinical practice. The study covered a 2-year period of "passive dissemination" of guidelines followed by a 2-year period of "active implementation." Documentation reflecting adherence to the guidelines was abstracted retrospectively from electronic medical records on 215 WWE aged 16-42 years. Data abstracted from case notes included counselling on contraception and pregnancy-related issues; follow-up during pregnancy; advice on supplementation of folic acid, calcium, and vitamin D; and serum folate measurements. A questionnaire assessing the knowledge of WWE issues was completed by 112 (71%) of 157 patients. Documentation that WWE issues had been addressed was found in approximately one third of medical case records with no measurable effect of active implementation. Only the follow-up during pregnancy seemed to have improved. Serum folate measurements in 51 women treated with enzyme-inducing antiepileptic drugs (AEDs) revealed folate deficiency in 11 (22%). Respondents to the questionnaire recalled having received information from their neurologists on the interaction between AEDs and oral contraceptives (46%), need to plan pregnancy (63%), and folic acid requirement (56%). Judged by a review of documentation in case notes, active implementation of guidelines had no measurable effect on clinical practice. However, the follow-up during pregnancy seemed to have improved. Patients' knowledge of WWE issues compared favorably with published studies. Better strategies are needed to secure successful implementation of guidelines.