29-11-2016| Survey on the use of Valproate (Epilim) 2016

'29-11-2016| Survey on the use of Valproate (Epilim) 2016' image

Epilepsy Ireland is conducting a survey of women who are taking the epilpesy drug Valproate (Epilim). The survey aims to find out whether women are aware of the risks associated with the drug in pregnancy and whether there is active communication taking place between women and their healthcare professionals.

All women with epilepsy (and parents of girls) taking the drug are invited to take part. The link is:

https://www.surveymonkey.com/r/valproate2016

 Background to the survey:

Two years ago, The European Medicines Agency introduced tighter restrictions on the use of the anti-epileptic drug (AED) sodium valproate (Epilim) in female children, adolescents, women of childbearing potential or pregnant women.

The restrictions were introduced because a number of studies found developmental problems in young children exposed to valproate in the womb. Previous studies had linked valproate to increased risk of autism, ADHD and malformations such as cleft palate at birth.

Since then, both Sanofi, the manufacturers of Epilim and the HSE have prepared information materials for healthcare professionals to advise them on the new restrictions and have issued patient information materials to assist medical professionals in communicating the issues with their patients.

In April and November of last year, Epilepsy Ireland conducted an online survey of people with epilepsy taking Valproate to determine the level of awareness of the new restrictions and to find out if discussions were taking place between patients and their medical team. The surveys found that the majority of patients were not aware of the issues and that discussions were not commonplace.

Epilepsy Ireland believes that all patients who could potentially be affected by these serious side-effects of valproate should be informed of the risks by their medical team and that informed decisions should be taken on their future epilepsy treatment.

We are now (November 2016) conducting the survey again to determine if the new materials and other awareness initiatives have led to greater discussion between patients and their medical team and to find out if further additional action is needed by bodies like the HSE and the Health Products Regulatory Authority and by organisations like the FACS Forum.

The FACS Forum is a group of charities that has come together to raise awareness of the issues involved. It includes Epilepsy Ireland, Migraine Association of Ireland, OACS Ireland, Disability Federation of Ireland, Shine, MRCG and GRDO.

Taking the Survey

To take this survey, you should be either:
(a) female and currently prescribed the drug valproate (epilim)
or
(b) The parent of a female child currently prescribed the drug valproate (epilim)

If you took the survey last year, YOU CAN STILL TAKE IT AGAIN NOW. We want to hear from everyone, whether you are aware of the issues or not.

The survey will take approx 10 minutes to complete.

Closing date: Friday, January 13th 2017