Epilepsy Medications in Pregnancy Survey Results (February 2023)

Background

In November 2022 Epilepsy Action, Young Epilepsy and Epilepsy Society carried out a survey of women and girls with epilepsy, and their parents and carers, asking them about the information they have received around the risks of taking some epilepsy medicines during pregnancy.

While the risks around valproate taken in pregnancy have been known for some years, some other epilepsy medicines also pose a risk if taken during pregnancy. A 2021 safety review of epilepsy medicines used during pregnancy carried out by the Medicines and Healthcare products Regulatory Agency (MHRA) showed that a number of epilepsy medicines were linked with an increased risk of birth abnormalities if taken during pregnancy, including carbamazepine, phenobarbital, phenytoin and topiramate.

While none of the medicines posed as much of a risk as valproate, using carbamazepine (brand names Curatil, Tegretol), phenobarbital (brand names Phenobarbital Accord, Phenobarbital Elixir) or topiramate (brand name Topamax) during pregnancy increases the risk of physical birth abnormalities compared with the general population.

Awareness of risks

The survey found that while there has been an increase in the proportion of people who are aware of the risks of valproate compared to the results of previous surveys in 2017 & 2019, a significant number of women and girls were unaware of the risks of other epilepsy medicines.

• 9% of women taking valproate didn’t know that taking it during pregnancy can increase the risks of serious birth defects or learning and development problems in children.
• 33% of women taking carbamazepine, topiramate, pregabalin, phenytoin, or phenobarbital didn’t know they increase the risk of physical birth abnormalities (if taken during pregnancy)
• 58% of women taking clobazam, gabapentin, oxcarbazepine and zonisamide didn’t know there is currently not enough research to make any firm conclusions about their safe use during pregnancy

Discussions with healthcare professionals

The majority of women and girls had discussed the risks of taking epilepsy medicines during pregnancy, with most of these discussions taking place with either a neurologist, paediatrician or epilepsy specialist nurse. However, there are several aspects that influence whether the individual would expect to have had a discussion, including pressures and limitations on healthcare professionals that mean these conversations are not happening.

• 31% of women have not had a discussion with a healthcare professional about the risks associated with taking epilepsy medicines during pregnancy
  • 25% of women have discussed the risks associated with taking epilepsy medicines during pregnancy with a GP in the last 12 months
  • 49% of women have discussed the risks associated with taking epilepsy medicines during pregnancy with a neurologist/pediatrician in the last 12 months
  • 9% of women have discussed the risks associated with taking epilepsy medicines during pregnancy with a pharmacist in the last 12 months
  • 42% of women have discussed the risks associated with taking epilepsy medicines during pregnancy with an Epilepsy Specialist Nurse in the past 12 months

Satisfaction with the information received

• Overall, 36% of women are not satisfied about the information provided about their epilepsy medication and its use during pregnancy (17% are not at all satisfied)
• However, 84% of respondents were satisfied with the level of information about valproate
• If women and girls have spoken with a healthcare professional, they were more likely to be satisfied with the discussion about the risks associated with taking epilepsy medicines during pregnancy (81% satisfied)

Recommendations

From the results, it is clear that there is still an ongoing requirement to communicate the risks associated with not only valproate, but all anti-seizure medications (ASMs) during pregnancy.

The availability of accessible, resourced and structured pre-conception counselling has the ability to support patient safety and make significant decisions relating to pregnancy.

We also urgently need more research into epilepsy medicines so that women and girls can make an informed decision about their treatment.

Giving consideration to the findings, and evaluating the current strategies which are not working, we are making the following recommendations for ACTION to address sustained quality and safety for those people of child baring age and to support them in making informed decisions supported by healthcare professionals:

To make any significant changes requires the healthcare system leaders and key stakeholders as identified against each recommendation to commit to:

1. A national review of pre-conception counselling services, this supports areas demonstrating health inequalities for people of child-bearing potential to make significant and appropriate life choices. That they are provided with the right information at the right time by the right healthcare professional. (NHS – Patient Safety, & MHRA).
2. Develop a repository of information and resources readily available with appropriate sign posting, has national backing and is available to both healthcare professionals and service users. That this is used as a learning and sharing platform e.g. Neurological Alliance Tool Kit safety, how to use the Annual Risk Acknowledgement Form (ARAF), EpSMon tool, SUDEP, drug risks and benefits. (NHS – Patient Safety & MHRA).
3. Commissioners fully understanding what services they have and are responsible for in relation to their capacity and allocation of resources e.g. Neurology/ Epilepsy services and appointment capacity, Epilepsy Specialist Nurse recruitment and service delivery, GP/ family planning services, and include these in service specifications. To monitor and discuss user experience and share the learning back into service evaluations. (Integrated Care Systems / Integrated Care Boards / Health Care Partnerships / NHS Services).
4. National commitment to fund research, there is not nearly enough available research and available information on the effects of taking ASMs on pregnancy. This should include supporting work being carried out by epilepsy charities, such as Epilepsy Research UK’s research priorities, Safe Mum Safe Baby (Epilepsy Society), and Priority 8 of the Priority Setting Partnership (PSP) (Epilepsy Action). NHS, MHRA

You can see more detail about the survey results here

What you can do to help

We are asking people to share the results of our survey with their local MP, asking them to support our recommendations. You can download a template letter to send to your MP.

If you need any help sending this letter, or would like to share your experiences of epilepsy medications in pregnancy, please contact us on campaigns@epilepsy.org.uk