February 9, 2021

An Online Tool for Information for Women With Epilepsy and Therapeutic Drug Monitoring in Pregnancy: Design and Pilot Study

Summary, originally published in Epilepsia Open

Objective: Information for women with epilepsy on pregnancy-related anti-seizure medication (ASM) and reliable tools for therapeutic drug monitoring (TDM) are important aspects of epilepsy care. We aimed to develop and test an online tool for patient education on pregnancy-related issues and communication with epilepsy nurses during pregnancy for women with epilepsy.

Methods: An existing national platform for online communication (1177.se) was used and an online tool was developed by two epilepsy nurses, two neurologists and an IT technician. The tool was launched as a complement to standard care and patients deciding to use it were invited to participate in a survey of user experiences and knowledge questions.

Results: The online tool consists of two modules; one for patient education and one for TDM during pregnancy. The latter module allows scheduling of automatic reminders of blood tests that are sent to patients at set intervals. The epilepsy nurse can communicate results and suggested dose changes in the tool. A total of 48 women answered the survey; 28 had been invited to use the information module and 20 to use the TDM module. Patient experiences were generally good and most users of the TDM module would prefer an online means of communication in future pregnancies. For epilepsy nurses, the tool provided good overview of patients currently pregnant and administrative advantages compared to traditional means of communication.

Significance: Online patient education and communication about therapeutic drug monitoring during pregnancy is feasible and can be a valuable part of future digitization efforts in epilepsy care.

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