How we made the decision

We check our guidelines regularly to ensure they remain up to date. We based the decision on surveillance 6 years after the publication of NICE guideline CG137 on epilepsies: diagnosis and management.

For details of the process and update decisions that are available, see ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual.

Previous surveillance update decisions for the guideline are on our website.


We undertook a search for Cochrane reviews published between 11 September 2013 and 19 December 2017 that focused on diagnosing, treating and managing epilepsy and seizures in children, young people and adults in primary and secondary care. This identified 51 Cochrane reviews directly relevant to the majority of recommendation areas within the guideline, in particular in relation to pharmacological treatment.

However, as there was an absence of evidence concerning diagnosis, investigation and classification of epilepsy, we also undertook a focused literature search for quantitative studies published between 11 September 2013 and 23 January 2018 that focused on investigations and diagnosis of the epilepsies. This identified 67 relevant studies. Topic experts were also contacted for their views on the recommendations on diagnosis, investigation and classification of epilepsy.

A previous surveillance review decision in 2014 decided not to update the guideline as there was insufficient new evidence to invalidate the majority of the guideline recommendations.

We also checked for relevant ongoing research (6 studies identified), National Institute for Health Research (NIHR) signals (2 studies identified) and policy and guidance documents (3 documents identified).

We reviewed studies highlighted by topic experts for any potential impact on the guideline scope and remit, with 13 studies and 4 pieces of ongoing research meeting inclusion criteria.

All relevant abstracts were assessed for their impact on the recommendations within NICE guideline CG137. See appendix A for details of all evidence considered and references.

Views of topic experts

We considered the views of topic experts, including those who helped to develop the guideline and other correspondence we have received since the publication of the guideline.

Five experts responded about NICE guideline CG137. They all indicated that the guideline should be updated. They highlighted that recommendations concerning pharmacological treatment require updating due to:

  • New advice from the MHRA around the use of sodium valproate for management of epilepsy, particularly in girls and women of childbearing age.

  • The availability of several new AEDs since the last revision of the guideline, including perampanel, and eslicarbazine.

  • New research suggesting that the combination of vigabatrin and prednisolone is more effective than either oral prednisolone or intramuscular tetracosactide used alone in completely suppressing infantile spasms (West syndrome).

  • Changes in the pricing of levetiracetam.

  • The use of cannabidiol in children with refractory epilepsy (potentially from parents independently obtaining it), and a lack of information concerning its use, legality, safety and efficacy.

  • Ongoing research in the area of the emergency management of acute tonic-clonic convulsions (and convulsive status epilepticus) in children in hospital.

Topic experts also suggested that a number of other areas should be updated:

  • Treatment of epilepsy in the elderly, including atypical seizures in the very elderly, anti-epileptic drug use in patients with dementia.

  • Access to specialist services and specialist nursing support for patients with learning disabilities in rural areas.

  • Information on SUDEP and nocturnal supervision.

  • The benefit of ketogenic diet in adults with severe refractory epilepsy.

Three experts responded concerning the additional request for their views on the diagnosis, investigation and classification of epilepsy recommendations. All topic experts indicated that the recommendation on diagnosis should be updated and 2 indicated that the recommendations on investigation and classification should be updated. The new ILAE guidelines on diagnosis and classification of epilepsy, the potential role of genetic testing in diagnosing the underlying cause of seizures, and the ability to get useful information from functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) scanning were cited as reasons for updating these recommendations.

Views of stakeholders

Stakeholders are consulted only if we decide not to update the guideline following checks at 4 and 8 years after publication. Because the decision was to update, we did not consult on the decision.

NICE Surveillance programme project team

Kay Nolan
Associate Director

Philip Alderson
Consultant Clinical Adviser

Judith Thornton
Technical Adviser

Charlotte Haynes
Senior Technical Analyst

Lynne Kincaid
Technical Analyst

Anita Sangha
Assistant Technical Analyst

The NICE project team would like to thank the topic experts who participated in the surveillance process.

ISBN: 978-1-4731-2926-9

This page was last updated: 12 April 2018