National charity Epilepsy Action has defended the inclusion of an important epilepsy-related indicator in the recommendations for 2010/11 Quality and Outcomes Framework (QOF). If adopted, the indicator would provide an incentive for GPs to ensure that women taking anti-epileptic drugs (AEDs) receive vital pre-conception counselling.
The National Institute for Health and Clinical Excellence (NICE) review committee that proposed this and other indicators has today come under criticism. Critics say it provided inadequate evidence of how effective the indicators would be. In particular, the proposed indicator for epilepsy has been singled out as lacking a cost-benefit analysis.
Epilepsy Action is concerned that such criticism will call the indicator for epilepsy into question and reduce the chance of women receiving essential pre-conception counselling.
Research shows that children born to women prescribed certain AEDs, such as sodium valproate, have a greater risk of developing neurological and physical disorders including autism[1] and spina bifida[2]. According to the UK Epilepsy and Pregnancy Register, women taking AEDs are at up to three times the risk of having a child with a major congenital malformation[3].
Pre-conception counselling is designed to reduce the risks to mother and child by allowing women of child bearing age to make informed decisions when planning a family. However, a 2007 survey by the charity[4] revealed that only 21 per cent of women with epilepsy received any pre-conception counselling.
Simon Wigglesworth, Epilepsy Action's deputy chief executive, said: "NICE acknowledged the difficulty of doing a cost-benefit analysis in its evaluation of this proposed new indicator. This is completely understandable given that the ultimate beneficiary of pre-conception counselling is an unborn, often as yet unconceived, and even unplanned, child. The health benefits to the patient should of course be the primary consideration when introducing new health measures. Both mother and baby stand to benefit enormously from this proposed indicator. However, we firmly believe that the saving to the NHS of avoiding major congenital malformations and neurodevelopmental complications such as autism more than justifies any cost.
“It is vital that women have the opportunity to discuss the options open to them with their healthcare professional. We sincerely hope that this indicator is adopted next year to help reduce the risks to both mothers and their children.”
Around 5,000 women with epilepsy become pregnant every year in the UK. The majority of women will experience uncomplicated pregnancies and give birth to healthy babies. The aim in epilepsy care is that women achieve good seizure control while posing the minimum risk to the unborn child. Women should never stop taking epilepsy medication without consulting their doctor as this could be potentially harmful to their health and their unborn child.
Epilepsy Action is the UK's largest member-led epilepsy organisation. Last year alone the organisation directly helped over 686,500 people through a range of services, including its Epilepsy Helpline, advice and information centre, and branch network.
References:
[1] Autism Spectrum Disorders Following In Utero Exposure to Antiepileptic Drug, R. L. Bromley, G. Mawer, J. Clayton-Smith and G. A. Baker on behalf of the Liverpool and Manchester Neurodevelopment Group. 2 December 2008.
[2] Morrow J I, Russell A, Gutherie E, et al 'Malformation risks of anti-epileptic drugs in pregnancy: A prospective study from the UK Epilepsy and Pregnancy Register', J Neural Neurosurg Psychiatry. 2005 Sep 12.
[3] More about the UK Epilepsy and Pregnancy Register can be found at http://www.epilepsyandpregnancy.co.uk/
[4] The 2007 Ideal World for Women Survey was sent to 2000 women with epilepsy, aged over 16. Some 537 usable responses were returned, a response rate of 26.85 per cent.