Understanding the information needs of women with epilepsy at different lifestages: results of the ‘Ideal World’ survey

The impact of some commonly prescribed anti-epilepsy drugs (AEDs) on female health is well documented. Yet many women continue to experience side effects such as menstrual irregularities, interactions with hormonal contraception/HRT and teratogenicity [Seizure 8 (1999) 201] through lack of awareness or opportunity to discuss problems with a health professional on a regular basis. The 'Ideal World' survey aimed to: (a) assess quality of current treatment information provision to women with epilepsy at different life stages (childbearing age, pre-conception/pregnancy, menopause); (b) identify information needs and wants with a view to ensuring that all women with epilepsy are counselled appropriately, in a timely manner and able to make informed choices about their treatment. The survey content was developed with a steering group of epilepsy specialists during 2001 (see 'ACKNOWLEDGEMENTS') and mailed to Epilepsy Action (formerly the British Epilepsy Association) UK female membership aged 19+ (approximately 12,000) during the period of January 2002. A sample of 2000 randomly selected responses was analysed by the Planning Shop International. The survey shows that women are not receiving important information about their condition and possible adverse effects of treatment, which could have profound implications for their health and the health of their unborn child. One third (33%) of women of childbearing age were not considering having children because of their epilepsy. Women with epilepsy need regular review and should receive appropriate information about the impact of their treatment in a timely manner.