These grants were made in 2006 by the Epilepsy Research Foundation.

The effect of being diagnosed with epilepsy on quality of life

Seizures and epilepsy can have a profound impact on a person's quality of life. Up till now, most research on quality of life in epilepsy has been concerned with the quality of life of people with already established epilepsy. As a result, we do not have a clear understanding of what factors contribute to changes in quality of life, both good and bad, that occur from the point of diagnosis of epilepsy onwards.

Professor Ann Jacoby of the University of Liverpool has been awarded £57,554 over three years to look at "Quality of life trajectories for new-onset epilepsy". She and her colleagues will look at how quality of life develops after the onset of epilepsy, and how it is affected by factors such as

" the number of seizures the patient has, and how successful their treatment is;
" how having seizures affects the patient's social interactions and psychological state; and
" any side effects produced by prescribed anti-epileptic drugs.

The study will follow the same set of patients as the recent SANAD study, the largest randomised trial ever conducted in epilepsy, which included 2,400 patients. It will follow all patients for at least four years, collecting information on their health, everyday functioning and quality of life, via postal questionnaires. The aim is to identify how best to support people, both medically and socially, when they are first diagnosed with epilepsy.

How do women with epilepsy take decisions about pregnancy?

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.