More than two-fifths (44%) of women with epilepsy say they have not discussed the risks of taking valproate during pregnancy with their healthcare professional in the last 12 months.
This is according to a new survey of 751 women published by three epilepsy charities: Epilepsy Action, Epilepsy Society and Young Epilepsy.
The survey also found that only two-fifths (41%) of respondents taking valproate said they had signed an Annual Risk Acknowledgement Form. The Medicines and Healthcare products Regulatory Agency (MHRA) says this should be completed every time a woman’s treatment is reviewed by a specialist, at least annually.
Valproate medicines include the epilepsy medicines sodium-valproate and valproic acid. They are very effective in controlling seizures for some people. However, it is now widely acknowledged that valproate can cause problems to an unborn baby if taken during pregnancy.
Risks include birth defects in around one in 10 babies born to women taking valproate, and developmental problems in around two-fifths of babies, according to the MHRA.
In 2018, the MHRA changed its regulations, advising healthcare professionals that valproate medicine should not be given to women with epilepsy who can become pregnant, unless it is the only medicine that works for them. If it is, a Pregnancy Prevention Programme (PPP) must be put in place, where women are made aware of the risks and how to avoid becoming pregnant while on the medicine.
Discussions about these risks with healthcare professionals are key in helping women make informed choices about their health and that of any children they may have.
The survey showed that among women who had not received any PPP information, knowledge of the risks around valproate was much lower. One-third (34%) of these women were not aware that valproate can cause birth defects, compared to one-tenth (11%) of respondents overall. Also, over two-fifths (43%) of these women were not aware of the risks of learning and developmental problems, compared with just under one-fifth (18%) overall.
The charities behind the survey are pushing for more resources and encouragement for healthcare professionals – epilepsy specialists and others, such as GPs – to have these conversations.
Simon Wigglesworth, deputy chief executive of Epilepsy Action, said: “It’s simply unacceptable that some women with epilepsy are still in the dark about the dangers of taking valproate in pregnancy.
“With a wealth of resources now available for health professionals to facilitate conversations, there is just no excuse for not explaining the risks to every woman taking valproate.
“Change needs to happen now to prevent babies being needlessly harmed and the devastating, life-long impact this has on families.”
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