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6 September 2013

Telling young people about SUDEP risks

A new patient-focused study which looked at when, where and how to tell young people with epilepsy about SUDEP has shown the majority of youngsters want to know about the risks but not necessarily at the point of diagnosis.

The study also revealed that although learning about Sudden Unexpected Death in Epilepsy (SUDEP) could cause initial anxiety, this feeling was temporary and the majority were fatalistic about their own risks.

Six hundred people with epilepsy die from SUDEP each year in the UK. Though devastating for those affected, this number is relatively low, compared with over half a million people with the condition in the UK. The study was carried out by Dr Susan Duncan of Edinburgh University and NHS Lothian in conjunction with Epilepsy Scotland.

Anxiety about SUDEP

Speaking at the International League Against Epilepsy 2013 in Glasgow, Dr Duncan told delegates:’ For a decade we have been talking about  when, where and how we tackle the subject of SUDEP. We have asked the clinicians. We have asked the parents and carers. Now we have asked the most important people – young adults with epilepsy.’

Researchers interviewed 22 patients aged 16-30 who had been previously informed about SUDEP. The study showed:

  • 45 per cent of those asked had initial feelings of fear and anxiety but for the majority these feelings appeared to settle down with no long-term distress
  • 45 per cent considered their risk of SUDEP to be low
  • 77 per cent thought it was important to be told about SUDEP
  • 59 per cent thought clinician judgement and family involvement should help determine the best time to discuss SUDEP with a young person
  • 64 per cent felt it would not be right to talk about SUDEP at diagnosis but that it should be discussed soon after
  • 27 per cent reported changing their behaviour when they learned about the risks. One person stopped drinking and five improved the regularity with which they took their medication.

Said Dr Duncan: ‘The majority were fatalistic about their SUDEP risk and did not think it was preventable. This may explain why only a minority did not change their behaviour or compliance after being told about SUDEP.’