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NGPSE
Epilepsy is the tendency to have recurrent, unprovoked epileptic seizures. The seizures are the result of excessive electrical activity in the brain. Seizures can have many different causes and in some people we do not know the cause. Epilepsy is not a single disease but rather a symptom of many different disease pathways. As a result it is not easy to predict the outcome in any individual with seizures.
The NGPSE was set up in the early 1980s with the intention of following a group of people with newly diagnosed seizures (including children with febrile seizures) to determine the outcomes. Patients were referred to the study by their GPs at the time, but were never contacted directly by the study team. Accepted practice at the time was that patients did not need to be asked for consent, particularly as their care was never affected in any way by inclusion in such studies.
Over a thousand patients were initially referred by their GPs, of whom a quarter were children with febrile seizures. About two thirds had definite or probable epilepsy.
Febrile convulsions
At the 12-year follow-up only six percent of children with febrile convulsions had gone on to develop epilepsy. This is slightly higher than the expected rate in the general population, but confirms the overall excellent prognosis for children with febrile seizures.
Definite and probable seizures
Results from this study to date have provided valuable information regarding outcomes in the short- and medium-term with regard to seizure recurrence and mortality. After nine years almost 90% were found to be in remission from seizures. After 12 years there was a slightly elevated risk of dying relative to the general population.
We now have the opportunity to complete our analysis of outcome for people with newly diagnosed epilepsy over 25 years. This will be one of the longest studies running. The principal aims of the study at this point are to determine long-term outcomes in patients originally diagnosed with both new onset seizures and febrile convulsion. As has always been the case, all information will be fully anonymised and no patient-identifiable information will ever be published.
For any further information, please contact Dr Aidan Neligan at 020 3108 0093 or by email a.neligan@ucl.ac.uk