Media Release: Study shows diagnosed young adults want early information on sudden and unexpected death in epilepsy


MOST young adults with a diagnosis 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.

Begins a spokesperson: “Clinicians can be more confident that sharing details on SUDEP will not create long-lasting anxiety for younger adults, aged 16-30.

“Yet even learning about SUDEP may not lead young patients to take their medication regularly.

“Finding ways to increase patient understanding of SUDEP and their risk status are key recommendations in this landmark study by Epilepsy Scotland, in partnership with NHS Lothian, and The University of Edinburgh.”

Epilepsy Scotland’s chief executive, Lesslie Young, outlined the reasons for conducting the first qualitative study of an age group most likely to succumb to SUDEP.

She said: “For the last decade, national epilepsy guidelines for Scotland (SIGN) have recommended giving information to patients about sudden and unexpected death in epilepsy.

“Up to 100 epilepsy-related deaths occur in Scotland each year and over half of these are estimated to be linked to SUDEP.

“An earlier national clinical audit (2002) suggested some of these sudden adult deaths were preventable. Younger adults seem to carry a higher risk. We wanted to examine their views on when and how they wanted to be told about this important topic.

“Their voice is key to the study.

“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.

“Further examination is needed into how younger adults can better understand these two important pieces of information given by health professionals.

“Two-thirds of respondents told us they felt SUDEP was not preventable and were fatalistic about it.”

Lesslie Young continued: “While there was a broad agreement over the need for information about SUDEP to be given at an early stage, the majority of young adults said they were pleased not to have received this information at the time of their diagnosis but did want it soon after.

“This valuable information is being incorporated in forthcoming revised SIGN guidelines and will inform future best medical practice.”

The key message from the research for senior author Dr Susan Duncan and Dr Ailsa McLellan, both senior consultant neurologists with NHS Lothian, is that SUDEP should be included as part of a comprehensive package of epilepsy information.

Dr Duncan commented: “Contrary to previously held opinion, telling people about SUDEP does not seem to make people ‘give up’.

“In fact, the majority of our young people took a fatalistic view that if SUDEP was going to happen it would – and they got on with the rest of their lives.

“Forthcoming revised SIGN guidelines for managing adults with epilepsy should cite this research as relevant evidence for communicating SUDEP information in a timely, appropriate way.”

University of Edinburgh senior lecturers, Dr Jeni Harden and Dr Richard Chin, who is also honorary consultant neurologist with NHS Lothian and director of the Muir Maxwell Epilepsy Centre at the University, welcomed the Scottish Government-funded study into SUDEP from the patient perspective.

Dr Chin said: “This study has been delivered though a pivotal collaboration between NHS Lothian, University of Edinburgh and Epilepsy Scotland and also between social scientists and medics.

“The findings reflect the long overlooked views of patients themselves on SUDEP and these should be considered in national guidelines and policy making.

“We urgently need more work to increase understanding of SUDEP.”

Jamie Hepburn, Minister for Sport, Health Improvement and Mental Health, said: “We want to ensure that everyone living with a neurological condition, such as epilepsy is able to access the best possible care and support that they need right from the start – this includes access to information about their condition.

“I would like to congratulate Epilepsy Scotland on their collaborative approach on carrying out this important research.

“This research was commissioned by Scottish Government following a Fatal Accident Inquiry report into the tragic deaths of two teenage girls in Fife.

“The report generated 11 wide-ranging recommendations including a reiteration that most people diagnosed with epilepsy be informed of sudden and unexpected death in epilepsy.

“I look forward to working with Epilepsy Scotland in the future.”


Notes to Editor

Epilepsy Scotland works with people living with epilepsy to ensure that their voice is heard. We campaign for improved healthcare, better information provision and an end to stigma.

This common serious neurological condition affects one in 97 people in Scotland.

We represent the estimated 54,000 people with epilepsy, their families and carers.

Our freephone Helpline (0808 800 2200) offers support and information, text 07786 209501, email:, find us on facebook, twitter @epilepsy_scot twitter or visit:

The research report is entitled: ‘A qualitative study of the reactions of young adults with epilepsy to SUDEP disclosure, perceptions of risks, views on timing of disclosure and behavioural change.’

The co- authors are: Anissa Tonberg, Epilepsy Scotland policy officer; Dr Susan Duncan, NHS Lothian consultant neurologist/ senior clinical lecturer, Department of Clinical Neurosciences and East of Scotland Epilepsy Service; Dr Ailsa McLellan, NHS Lothian lead paediatric neurologist for epilepsy; Dr Richard Chin, NHS Lothian consultant neurologist/ University of Edinburgh senior clinical lecturer and director of the Muir Maxwell Epilepsy Centre; Dr Jeni Harden, University of Edinburgh senior lecturer in Social Science and Health and co-director of the Centre for Research on Families and Relationships

27 patients (15 female) 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 sudden and unexpected death in epilepsy.

The study was funded by the Scottish Government’s Health and Healthcare Improvement Directorate.

Other key findings from the research were that:

* Half of respondents described their risk of SUDEP as low, while the remainder were uncertain or avoided thinking about it

* 41 per cent participants had nocturnal tonic clonic seizures but were either unaware that this may place them in a higher risk category or identified themselves as low risk

* There was broad agreement that SUDEP information should be given; 81 per cent thought disclosure important and everyone should be told about SUDEP. 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 (remainder did not comment)

* 37 per cent reported changing their behaviour because of SUDEP disclosure, including improved adherence to medication, potentially mitigating risk. However, the majority (59 per cent) made no change in their behaviour

* A third felt SUDEP preventable; however most felt it was not preventable and appeared fatalistic about it. This fatalism was in contrast to the lengths people went to in their daily lives to control other aspects of their epilepsy

* The majority of participants had not sought further information about SUDEP; most said that they did not think about or deliberately avoided thinking about SUDEP.

Published papers about the study are due to appear in the Epilepsy and Behaviour Journal, Epilepsy Currents, Chronic Illness and Seizure.

Early data from the study has been presented to professional audiences at several international conferences during 2013/14, including the American Epilepsy Society, the UK annual scientific meeting of the International League Against Epilepsy and the British Sociological Association’s Medical Sociology Conference.

Data was also presented to the Scottish Paediatric Epilepsy Network at the Scottish Epilepsy Group research day and at an international symposium on SUDEP held at Oxford in 2014.

A national sentinel clinical audit of epilepsy-related death (2002), Epilepsy-death in the shadows, suggested that approximately 60 per cent of all epilepsy deaths examined in that audit were SUDEP and could be as high as 67 per cent. Overall, 29 per cent of adult deaths in that audit were considered to have been potentially avoidable by an expert panel.

To contact co-authors and/or to interview a young person (Edinburgh) about SUDEP (not a study participant) call: Allana Parker, public affairs officer 07884 012 147/ 0141 427 4911.

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Epilepsy Scotland contact details…

Contact: Allana Parker
Phone: 07884012147