Better communication needed about epilepsy medicine risks in pregnancy

More than half of UK women with epilepsy under the age of 24 are not aware of the risks of some epilepsy medicines in pregnancy, a new survey by three epilepsy charities has found.

Epilepsy Action, Epilepsy Society and Young Epilepsy conducted a survey of over 1,200 women and girls with epilepsy across the UK in November and December 2022, to gauge awareness around the risks of some epilepsy medicines if taken in pregnancy.

The Epilepsy Medication in Pregnancy survey showed that 53% of women under 24 years old were not aware of potential risks of taking some epilepsy medicines, such as topiramate, carbamazepine, phenobarbital, phenytoin or pregabalin, in pregnancy.

These medicines, alongside sodium valproate, can increase the risk of babies being born with physical birth abnormalities if taken during pregnancy.

Nearly two fifths (39%) of under 24-year-olds said they were not satisfied with the information they received about these risks.

Communication must be improved

Overall, a third (33%) of women taking these medicines were not aware of the risks they carry in pregnancy.

The survey did show that awareness around the risks of taking sodium valproate in pregnancy is improving, with only 9% of responders unaware. However, the level of awareness was different between age groups, with a fifth (20%) of over 45-year-olds unaware of the risks, compared to just 2% of 25-44-year-olds.

The charities say the overall results show that communication around epilepsy medicines and pregnancy must be improved.

Over a third of the responders (36%) said the information they received about the risks from their medicines was not adequate, including one in responders (17%) who said they weren’t at all satisfied.

Insufficient effort

Alison Fuller, director of Health Improvement and Influencing at Epilepsy Action, said: “While it is encouraging that there has been an increase in the proportion of people who are aware of the risks of valproate medicines, it is very concerning that a significant number of women and girls were unaware of the risks of other epilepsy medicines.

“We have received multiple testimonies from women with epilepsy saying no discussions were ever held with them about the risks of taking certain medications while pregnant, some of which were really upsetting.

“Our report on the survey results outlines recommendations for key stakeholders on how to address safety by communicating the risks of these medications, and ensure that the historic mistakes made with sodium valproate are not repeated.

“These include a national review of pre-conception counselling services to ensure that all women and girls with epilepsy are provided with the right information, at the right time and by the right healthcare professional.

“We will actively be pursuing and monitoring their implementation.

“We would also encourage all women and girls affected to raise this issue with their MPs, asking them to support our call for a national commitment to fund research on the effects of taking ASMs on pregnancy.”

The charities are calling for better communication and more information from healthcare professionals, and more research in the area.

It is vital that anyone taking epilepsy medications does not suddenly stop taking them as doing so could cause breakthrough seizures which could be harmful. The charities encourage anyone with any concerns to talk directly to their doctor about their treatment options.