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06-05-2015 | Scottish study shows young adults with epilepsy want early information on SUDEP

06 May 2015
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Most young adults with a diagnosis of epilepsy want to know about the risks of sudden and unexpected death in epilepsy (SUDEP), and want to know early, according to new research commissioned by the Scottish Government.

The research was conducted by Epilepsy Scotland, in partnership with NHS Lothian and The University of Edinburgh following a Fatal Accident Inquiry into the deaths of two teenage girls in Fife. The Inquiry had generated 11 wide-ranging recommendations including a reiteration that most people diagnosed with epilepsy be informed of sudden unexpected death in epilepsy.

27 patients aged 18-29 were recruited to this study via the Edinburgh and South East Scotland Epilepsy Service and were interviewed. All had been previously informed of SUDEP.

There was broad agreement among participants that SUDEP information should be given; 81 per cent thought disclosure important and everyone should be told about SUDEP at an early stage. Most of those individuals highlighted the importance of clinician judgement and family involvement on the timing of the disclosure especially when the individual was anxious, depressed or had a learning disability.

Most participants did not report long-term anxiety following SUDEP disclosure. 48 per cent reported being untroubled by the news and 44 per cent reported initial, though not long-lasting, anxiety.

However, just 37 per cent reported changing their behaviour because of SUDEP disclosure, including improved adherence to medication, potentially mitigating SUDEP risk. Similarly, only one-third of participants felt that SUDEP was preventable and the majority had not sought further information; most said that they did not think about or deliberately avoided thinking about SUDEP.

While the study shows that doctors can be more confident that sharing details on SUDEP will not create long-lasting anxiety for younger adults, it appears that even learning about SUDEP may not lead young patients to take their medication regularly. Finding ways to increase people's understanding of SUDEP and their risk status are key recommendations in the study.

Epilepsy Scotland's chief executive, Lesslie Young said, "The fact is, despite being counselled by their medical team about SUDEP, most of the participants interviewed in the study did not retain a clear understanding of SUDEP and many were also unclear about their own risk status based on their epilepsy.

"Two-thirds of respondents told us they felt SUDEP was not preventable and were fatalistic about it. "Further examination is needed into how younger adults can better understand these two important pieces of information given by health professionals."

Published papers about the study are due to appear shortly

See www.epilepsyscotland.org.uk.

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