Every year in the UK about 1000 people die of epilepsy-related causes. Studies show that there is an increased risk of premature death in patients with epilepsy compared with the general population. There is considerable debate in the medical community over whether and when to tell patients about the risks, especially since the risk differs from person to person. Some doctors argue that the discussion can cause unnecessary alarm and that patients have the right not to know; others that they have a duty to inform patients about all the risks.

Dr Mohanraj and colleagues from the University of Glasgow analysed the medical records of people who attended the epilepsy service of the Western Infirmary in Glasgow between 1981 and 2001. These included 890 people with newly diagnosed epilepsy, and 2689 people who had been unsuccessfully treated elsewhere and referred with chronic epilepsy. Mortality rates in these people, subdivided by epilepsy type, age and cause of death, were compared with those of age-matched and sex-matched comparison groups of people who did not have epilepsy.

Writing in the June edition of Lancet Neurology, they reported that patients newly diagnosed with epilepsy had a 42% increase in mortality over the non-epilepsy group. However within the newly diagnosed group, patients who responded to treatment and became seizure-free showed no increase in risk; the increased risk only applied to those who continued to have seizures. Mortality rates in the chronic epilepsy group were even higher, with more than twice the expected number of deaths. The difference in mortality risk was most marked in patients less than 30 years old.

The risk of Sudden Unexpected Death in Epilepsy (SUDEP) was nearly two and a half times higher in people who had chronic epilepsy than in people with newly diagnosed epilepsy.

The researchers concluded that it may not be necessary to discuss the risk of premature death with a person who has just been diagnosed with epilepsy. However if their treatment fails or they refuse treatment, and continue to have seizures, then they must be informed of the risks.

Current national treatment guidelines for England and Wales by the National Institute for Health and Clinical Excellence recommend that doctors inform all patients about the risk of SUDEP, tailoring this information to the patient's individual risk.

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