Our Co-ordinating Editor and Consultant Neurologist Professor Tony Marson discusses a recently published Cochrane review on how treatments for epilepsy in pregnancy may affect the unborn child and the dilemma facing young women making decisions about their treatment.

The Cochrane review published in October 2014 highlights current evidence about the intelligence of children born to women taking antiepileptic medication. One medication, valproate, is of particular concern as it is associated with a drop in IQ sufficient to impact on educational and employment opportunities. There was no convincing evidence that other commonly used antiepileptic drugs affect offspring’s IQ.

As a result, some young women with epilepsy face a very tough choice about which antiepileptic medication to take for their epilepsy.

Epilepsy is a common condition with a life time risk of 3-5%. About a quarter of people with epilepsy have an idiopathic generalised epilepsy, the cause of which is genetic. This type of epilepsy starts in childhood and adolescence and valproate has been proven to be significantly better than other treatments at controlling seizures. It is young women with this type of epilepsy that face the most difficult choice.

At the time of epilepsy diagnosis, the majority of young women are not planning to start a family in the short to medium term. However, whichever medication they start, they may still be taking it if and when they do decide to conceive.

Weighing up possible harms

As a result, young women and their families are faced with a very difficult decision. Do they choose valproate, accepting the risk in pregnancy and the likely need to consider changing treatment before conceiving? Or do they choose a less effective treatment and risk delay in controlling seizures, which also carries risks? Uncontrolled seizures can result in injury, impact on education and opportunities, impair quality of life, and are associated with an increased risk of sudden death (about 0.5% per year for uncontrolled seizures).

In order to make informed decisions it is vital that young women and their families have access to dedicated and coordinated services, from which they can receive detailed counselling from trained specialists. In developed world health care settings, this will usually be undertaken by paediatric or adult neurologists and epilepsy specialist nurses. This does highlight the need for epilepsy to be diagnosed by a specialist who is able to differentiate the different types of epilepsy and who is up to date with the latest evidence. It also highlights the need for women taking antiepileptic medication to continue to have access to specialist services so that they too can be kept up to date and be encouraged to avoid unplanned pregnancy.

There are particular challenges in the developing world where there is a massive treatment gap, with a large proportion of people with epilepsy having little or no access to care. In this setting the greatest risk to women is that their epilepsy is not controlled, but there is also a greater risk that they might receive valproate inappropriately.

How should the regulators respond to this information? The European Union Medicines Agency (EMA) is considering recommending that women are not prescribed valproate unless other treatments have failed. Whilst this approach might protect offspring, it denies women access to an effective treatment and incurs other significant risks at a time when they are not planning to conceive. The EMA view seems one sided and to have failed to take both benefit and risk appropriately in to account.

This dilemma is one of many faced by people with epilepsy who are often in the shadows due to continued stigmatisation, and highlights the need for access to specialist and integrated care.

This article originally appeared in the UK Cochrane Centre's blog, Evidently Cochrane on 30th October 2014.