Clinical guidelines
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The April 2022 NICE guideline (NG217) focuses on enhancing the diagnosis and treatment of various seizure types and epilepsy syndromes in children, young adults and adults. It's designed to mitigate risks associated with epilepsy and is specifically tailored for healthcare professionals1
Encourage individuals with epilepsy to self-manage and make informed decisions by discussing key topics such as:
- Common seizure triggers
- Epilepsy medications, adherence importance and potential adverse events
- Strategies to reduce epilepsy-related risks, including Sudden Unexpected Death in Epilepsy (SUDEP)
- The effect of epilepsy on daily activities, like driving
- Understanding their specific epilepsy syndrome or seizure types
NICE advises offering individuals with epilepsy, along with their families and caregivers when suitable, chances to discuss various concerns. This includes a range of topics not limited to the ones specifically listed1
Activities of daily living
- Safety Precautions: Prioritise activities such as showering instead of bathing, practice safe cooking, ensure the safety of infants and children, and avoid high-altitude work.
- Child and Youth Safety: Supervise swimming and water sports for children and young people, and prevent climbing without supervision.
- Lifestyle and Social Impact: Address how epilepsy can affect personal and social activities, including experiences of social exclusion.
- Driving Regulations: Outline the driving rules from the DVLA in the UK and the RSA in Ireland for those with epilepsy.
- Work and Education: Highlight issues and rights regarding employment and education for individuals with epilepsy.
Carers
- Caregiver Challenges: Highlight the physical and emotional aspects of caring for an individual with epilepsy.
- Carer Support: Stress the importance of accessible support and resources for caregivers, tailored to their unique needs.
Cognition
- The potential effects of epilepsy and antiseizure medications (ASMs) on cognitive abilities, such as memory, attention and concentration, and their implications for educational success and workplace performance.
Medication
- Adherence to ASM(s) and how to improve this.
- Experiences of adverse events from medication, and coping strategies.
- Explaining changes to medication.
Mental health
- Emotional health and psychological wellbeing, e.g., experience of depression, anxiety or low mood.
- Neurobehavioural disorders commonly associated with epilepsy, including autism and ADHD.
- Stigmatisation of epilepsy.
SUDEP
- Concerns of people with epilepsy and their families and carers about SUDEP.
- Information about SUDEP, including risk factors and how to reduce the risks.
- Availability of SUDEP counselling.
Referral to tertiary specialist services
Ensure access to tertiary epilepsy services for anyone with suspected or confirmed epilepsy through their specialist. Refer individuals to these services within 4 weeks if any specific conditions apply.
Non-pharmacological treatments1
- Ketogenic diet: consider a ketogenic diet under the guidance of a tertiary epilepsy specialist, in people with:
- certain childhood-onset epilepsy syndromes
- drug-resistant epilepsy if other treatment options have been unsuccessful or are not appropriate.
- Resective epilepsy surgery.
- Vagus nerve stimulation.
Please see the full NICE guidelines for details of non-pharmacological treatments.1
Individualised treatment strategy
Develop an individualised ASM treatment strategy taking into account:
*Including their importance in reducing the risk of epilepsy-related death.
Reducing the risk of epilepsy-related death including SUDEP
Monitoring and review
Annually review adults with epilepsy who have:1,2
Nice recommendations for the use of ONTOZRY®▼(cenobamate)3
1.1 Use cenobamate as an add-on for focal seizures in drug-resistant epilepsy in adults, after failing at least 2 antiseizure drugs, and if:
- It's an additional treatment following other unsuccessful add-ons
- Treatment starts in a tertiary epilepsy service.
1.2 Existing NHS cenobamate treatments before this guideline remain unchanged. Patients can continue with their current funding arrangements until a joint decision to stop is made with their NHS clinician.
SMC recommendations for the use of ONTOZRY®4
ONTOZRY® is accepted for restricted use in NHS Scotland. It's indicated for adjunctive treatment of focal-onset seizures, with or without secondary generalisation, in adult patients with epilepsy inadequately controlled by at least 2 anti-epileptic drugs.
SMC restriction: SMC specifies its use for drug-resistant epilepsy as a second-line adjunctive anti-seizure medicine post the failure of a first adjunctive anti-seizure medicine.
Clinical trials show cenobamate's effectiveness over placebo, significantly reducing focal seizure frequency by ≥50% in patients with uncontrolled focal seizures, despite anti-epileptic medication use.
Footnotes
© NICE 2021 Cenobamate for treating focal onset seizures in epilepsy. Technology appraisal guidance TA753. Available from https://www.nice.org.uk/guidance/ta753. 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.3
© SMC 2022 Advice available from https://www.scottishmedicines.org.uk/medicines-advice/cenobamate-ontozry-full-smc2408. All rights reserved. Subject to Notice of rights. SMC advice is prepared for the National Health Service in Scotland. SMC accepts no responsibility for the use of its content in this product/publication.
Abbreviations
ADHD, attention deficit hyperactivity disorder; ASM, anti-seizure medication; DER, drug-resistant epilepsy; DVLA, Driver and Vehicle Licensing Agency; EEG, electroencephalogram; HCP, healthcare professional; ICGP, Irish College of General Practitioners; MHRA, Medicines and Healthcare Products Regulatory Agency; NICE, National Institute for Health and Care Excellence; RSA, Road Safety Authority; SMC, Scottish Medicines Consortium; SUDEP, sudden unexpected death in epilepsy.
- NICE. Epilepsies in children, young people and adults. NICE guideline 217. 27 April 2022. Available at: https://www.nice.org.uk/guidance/ng217 (last accessed November 2024).
- Medicines and Healthcare products Regulatory Agency. Antiepileptic drugs in pregnancy: updated advice following comprehensive safety review. Published 7 January 2021. Available at: https://www.gov.uk/drug-safety-update/antiepileptic-drugs-in-pregnancy-updated-advice-following-comprehensive-safety-review (last accessed November 2024).
- NICE. Cenobamate for treating focal onset seizures in epilepsy. Technology appraisal guidance TA753. 15 December 2021. Available at: https://www.nice.org.uk/guidance/ta753 (last accessed November 2024).
- SMC Advice: Cenobamate. 7 February 2022. Available at: https://www.scottishmedicines.org.uk/medicines-advice/cenobamate-ontozry-full-smc2408 (last accessed November 2024).
MAT-UKI-0053-P | November 2024