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Unmet Needs in Epilepsy Treatment

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Unmet needs in epilepsy treatment

The disease burden of epilepsy is high1–3

Seizures cause interruptions that can impact virtually every life choice – education; careers; and even the decision to "risk" pregnancy to start a family.2,3

Freedom from seizures without side effects can be considered the most clinically relevant outcome of epilepsy treatment.1,4

Seizure freedom has an important influence on overall health outcomes

Compared with being seizure free, patients with uncontrolled seizures (one or more seizures within the past 5 years) are:5*

Data from a study of 713 adults with epilepsy.

Figures adapted from Josephson et al. 20175

It is estimated that up to 70% of people living with epilepsy could live seizure free with the right treatment and advice.2

In the UK, around 1,000 people die every year from causes related to epilepsy6

    • 50% of these deaths are from sudden unexpected death in epilepsy (SUDEP), where no obvious cause of death can be found6,7
    • 42% of epilepsy-related deaths are thought to be avoidable7
    • The risk of SUDEP is elevated in people who continue to experience seizures7

The cost of epilepsy to the NHS is estimated to be at least £1.5 billion annually, and there are 100,000 emergency admissions due to epilepsy each year.8

The real effect of epilepsy†

68% of people in the UK feel those with epilepsy "just need to be more positive" when living with the condition.6

A third say that the condition does not impact on mental health.6

Bob: “Even when you're not having seizures, epilepsy is a part of you. It's really impacted my overall wellbeing. But the more you tell people about how it affects you, the more they understand.”

1 in 4 people in the UK think that epilepsy has no impact on a person’s life aside from having seizures.6

Charlotte: “People think that epilepsy doesn’t affect other areas of your life but most of my life has been impacted by seizures."

People with epilepsy are more than twice as likely as those without the condition to be unemployed. Factors that may affect employment include uncontrolled seizures and perceptions of stigma.9

But this increases to 75% of people who are not seizure free.

Craig: “I don't like talking about my epilepsy, especially at work, because of what people might think. But my manger has been really supportive and I feel more confident talking about it now.”

Footnotes:

*People with epilepsy who have experienced one or more seizures within the last 5 years (n=412/713), compared with people with epilepsy who have been seizure free for the last 5 years (n=297/713; seizure status not known for 4 patients, who were therefore excluded from the analysis).5

† Patient quotes are fictitious.

SUDEP, sudden unexpected death in epilepsy.

NICE 2021 Cenobamate for treating focal onset seizures in epilepsy. Technology appraisal guidance TA753. Available from https://www.nice.org.uk/guidance/ta753.
Resource impact statement. Available from https://www.nice.org.uk/guidance/ta753/resources/resource-impact-statement-pdf-14123088042181. All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

  1. NICE Technology Appraisal |Guidance [TA753]. Cenobomate for treating focal onset seizures in epilepsy. Published 15 December 2021. Available at: https://www.nice.org.uk/guidance/ta753/chapter/3-Committee-discussion (last accessed July 2023).
  2. World Health Organization. Epilepsy Key facts. Available at: https://www.who.int/news-room/fact-sheets/detail/epilepsy#:~:text=Signs%20and%20symptoms&text=Similarly%2C%20the%20risk%20of%20premature,countries%20and%20in%20rural%20areas (last accessed July 2023).
  3. A Life Interrupted. Shaping the future of research into epilepsy report. Available at: https://epilepsyresearch.org.uk/wp-content/uploads/2020/10/ALifeInterrupted-Shaping-the-Future-of-Research-into-Epilepsy.pdf (last accessed July 2023).
  4. Halford JJ, et al. Acta Neurol Scand. 2020;142(2):91‒107 .
  5. Josephson CB, et al. Epilepsia. 2017;58(5):764-71.
  6. Epilepsy Action. Epilepsy facts and terminology. Available at: https://www.epilepsy.org.uk/press/facts (last accessed July 2023).
  7.  SUDEP Action. SUDEP & Epilepsy Risks. Available at: https://sudepactionday.org/what-is-sudep/ (last accessed July 2023).
  8. Open Access Government. Shaping the future of research into epilepsy. Available at: https://www.openaccessgovernment.org/research-into-epilepsy/111022/ (last accessed July 2023).
  9. Francis R, et al. Employment support for people with epilepsy: Qualitative research to identify what good employment support for people with epilepsy should look like. Institute for Employment Studies. 2019.

UK17131P | August 2023

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