An Ideal World for Women 2007- Background
Results of Epilepsy Action Survey
Sample: 2000
Response: 537
Two thousand contacts were identified and questionnaires were mailed to the women with their copy of Epilepsy Today, Epilepsy Action's magazine for members. The questionnaire was also available on the charity's website for download or for completion online. 537 usable responses were received, giving a 26.85 per cent response rate.
Section 1 - for women aged between 16 and 45The three most important issues for women in this group were:
The risk of epilepsy/effects of anti-epileptic medication (AEDs) on the unborn child.
Avoiding an unplanned pregnancy.
The risk of a child developing epilepsy.
Key findings
- 85 per cent of women reported being aware that some AEDs interact with hormone-based contraceptives.
- 51 per cent said they had been given information that their AEDs could make hormone-based contraception less effective.
- However, 9 per cent of respondents were told that their AEDs would not interact with their hormone-based contraception.
- 25 per cent stated they had not been given information.
- As many as 82 per cent were aware that in very rare cases AEDs can cause birth defects.
- 25 per cent stated they had not been given any information relating to pregnancy and AEDs.
- 68 per cent of women who were pregnant or have had a baby in the previous five years were not offered joint care by an epilepsy specialist nurse and midwife.
- 69 per cent had not been given advice about taking AEDs when breast feeding.
- 68 per cent had not been offered information about caring for a baby when you have epilepsy
Section 2 - for women aged over 45 years oldThe three most important issues for women in this age group were:
AEDs and osteoporosis.
Changes in seizures during menopause.
Interaction of AEDs and hormone replacement therapy (HRT).
Key findings
- 81 per cent reported that they were not given any information regarding epilepsy and its treatment in relation to the menopause and HRT.
- Of the women who had received information,
- 32 per cent were not told that seizures patterns could change.
- 34 per cent were not told that some AEDs can affect HRT.
- 28 per cent were not told that some AEDs can increase the risk of osteoporosis.
Section 3 - all respondentsIn general, respondents did not feel that they received information at the appropriate time for them. However overall, information relating to contraception and pregnancy seems to be given out more frequently than, say, information on the menopause and osteoporosis.
Key findings
- 39 per cent reported that they felt well informed about their epilepsy and treatment,
- A further 10 per cent said that they trusted their doctor to make the choices about their epilepsy and treatment.
- However, 52 per cent stated that they would like to be more informed so that they could either discuss their epilepsy and treatment with their doctor or ask for a review/change to their treatment.