Survey of an online system for information to women with epilepsy of childbearing age and management during pregnancy: A 3-year evaluation

ObjectiveWe developed an online tool for women with epilepsy consisting of two modules: one with information on pregnancy-related issues (information module) and one for reminders about blood test and communication about dose changes (pregnancy module). Our aim was to assess perceived value, user-friendliness and improvement of patient knowledge in users.MethodsThe system was launched in 2019 and patients invited by epilepsy nurses were asked to participate in a survey 1 month after the invitation for the information module, and 1 month postnatally for the pregnancy module.ResultsBy November 2022, the system had been used by 96 individuals out of 100 invited in the pregnancy module, in a total of 114 pregnancies. One hundred and eleven women had been invited to the information module, and 70 of these accessed it. The survey received 96 answers (44 information, 52 pregnancy). User-friendliness was rated as good or very good by a little over half of the users; 55% in the information module and 52% in the pregnancy module. Among pregnant women, 83% found the TDM part useful and most would prefer a similar system in future pregnancies. Sixty-four percent of users of the information module and 48% of the pregnancy module found that the system had increased their knowledge. Two knowledge questions were answered correctly by a significantly higher proportion of those that had accessed the online information.SignificanceThere was great demand for online communication during pregnancy and our experiences of implementation can hopefully assist digitalization of epilepsy care elsewhere. Online information also seems to increase knowledge about pregnancy-related issues, but our invitation-only method of inclusion was not effective for widespread dissemination. Patient-initiated access with optional epilepsy-team contact if questions arise could be an alternative.Plain Language SummaryWe have performed a survey of users of a new Internet-based tool for information to women of childbearing age and communication about dose changes during pregnancy. Users were overall satisfied with the tool and answered some knowledge questions more accurately after accessing the information.