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Lack of information threatens health of women with epilepsy and their unborn children

3 April, 2002

A survey by the charity British Epilepsy Association (BEA) reveals, for the first time, that women with epilepsy are not receiving important information regarding their treatment, which could have profound implications for their health and the health of their unborn child.

The results of the survey are being presented this week at the International League Against Epilepsy (ILAE) meeting in Exeter.

The 'Ideal World Survey' was carried out among an analysis of 2,000 women with epilepsy aged 19 and over to identify specific information wants and needs at different stages of life - childbearing age, pre-conception/pregnancy and the menopause. The survey shows that women are not receiving appropriate information about their condition, its treatment and possible adverse effects of treatment. The survey showed that: 

  • Over a third (38 per cent) of women aged between 19-44 had not been told of possible interactions between their epilepsy treatment and the contraceptive pill, putting them at risk of an unplanned pregnancy
  • 61 per cent of the women who already had children were taking an older anti-epilepsy drug* with a known risk of birth defects; yet less than half of them (45 per cent) remember being told that their medication may affect the unborn child. Indeed, 22 per cent were not given any information about pregnancy and epilepsy medication. 
  • The majority of women (75 per cent) who have already had children had not been referred to a specialist centre in connection with their pregnancy
  • 39 per cent of women over the age of 45 had not been given any information about epilepsy and its treatment in relation to the menopause and HRT.

"The survey indicates that the information needs of women with epilepsy are not being met," comments Professor Pamela Crawford, Consultant Neurologist at York District Hospital. "Women with epilepsy require a different approach to epilepsy treatment than men and its is therefore crucial that they receive special attention and regular treatment reviews to ensure that the risk of unplanned pregnancy and birth defects are minimised."

It is known that some anti-epilepsy drugs (AEDs) can affect female hormonal balance, causing menstrual abnormalities and may lead to conditions such as polycystic ovary syndrome (PCOS) which can impair fertility.

Some of these anti-epilepsy drugs can increase the risk of the baby having medical problems such as neural tube and heart defects, low birthweight and cleft palate

The survey showed that women with epilepsy want to make an informed choice about their treatment: 

  • 43 per cent of women want to be more informed so that they could suggest/tell their doctor review their medication or so that they could tell their doctor to review their medication. 
  • The vast majority of women (88 per cent) who are considering having children want to have more information about epilepsy treatments and the possible risk to the unborn child with 71 per cent of 19-44 year olds overall saying that of the issues relating to pregnancy, this was the most important; 
  • Nearly two-thirds (57 per cent) of women want the latest information on epilepsy treatment and risk of birth defects on an ongoing basis, even if data is incomplete; 
  • 72 per cent of women (aged 45-54) want to receive information about the impact of epilepsy medication on the menopause - especially in relation to osteoporosis (89 per cent).

Sharon Hudson, Public Relations Officer for BEA says:

"The survey confirms that women clearly want the latest, most up-to-date information about treatment options so that they can actively participate in treatment decisions. Women should be encouraged to talk openly about aspects of their condition, its treatment and possible adverse effects of treatment in a timely fashion - especially in relation to pregnancy."

Indeed a third (32 per cent) of women aged 19-44 who were not considering having children in the future said the decision was linked to their epilepsy.

"In this day and age, having epilepsy should not be a limiting factor to having a child. We need more women-centred clinics - such as the one pioneered by Dr Tim Betts at Birmingham University which offers pre-conception counselling and treatment review as well as follow up during pregnancy and beyond. With the right information and support at the right time, women with epilepsy can make informed choices and overcome perceived barriers which often obscure the full range of options open to them," commented Sharon Hudson.

In terms of the ideal time to receive information about the effect of epilepsy treatment at the different life stages, the survey confirmed a consistent preference for information before the time that it will be needed. For example, the majority of women in the survey want information about the effect of epilepsy on pregnancy and on the risk of a child developing epilepsy before they consider pregnancy. Similarly, women expressed a desire to have information on the effect of epilepsy on periods and contraception sooner rather than later.

* Older anti epilepsy drug (AED) in this case = carbamazepine, sodium valproate and phenytoin monotherapy or polytherapy including carbamezepine, sodium valproate or phenytoin.)