About a third of the 456,000 people with epilepsy in the UK are women of childbearing age (16 to 45 years). Many of these women may become pregnant whilst taking anti-epileptic drugs. We know a great deal about the effect of these drugs on the mother’s seizures, and more and more about how both the drugs and the seizures affect the infant’s growth and future development, but there are still unknown factors. It is not known how women with epilepsy who are taking anti-epileptic drugs weigh up the risks of having a miscarriage or a disabled child (or any other “adverse outcome of pregnancy”) and arrive at a decision about whether or not to become pregnant, and further decide how to prepare for the pregnancy.
Miss Janine Winterbottom at the University of Liverpool and the Walton Centre for Neurology and Neurosurgery has been awarded an Epilepsy Research Foundation Fellowship to gain a better understanding of how women with epilepsy interpret information about risk. Her study “Women with epilepsy preparing for pregnancy; a qualitative analysis of the perception and communication of risk information” (for which she was awarded £86,779 over three years) will use focus groups and interviews to look at how women with epilepsy perceive information about pregnancy risk at different stages of their reproductive lives, and how they are involved in decision-making when preparing for pregnancy. The study will provide an account of their beliefs, experience and feelings, all of which might shape their reproductive behaviour. The aim is to improve how information about these risks is communicated. This has immediate applicability to how these women are counselled by their doctors, and how their epilepsy care is managed leading up to and during a pregnancy.