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Epilepsy HAI

About

What is covered

This pathway covers the diagnosis and management of the epilepsies in children, young people and adults in primary and secondary care.
Epilepsy is a common neurological disorder characterised by recurring seizures. Different types of epilepsy have different causes. Accurate estimates of incidence and prevalence are difficult to achieve because identifying people who may have epilepsy is difficult. Epilepsy has been estimated to affect between 362,000 and 415,000 people in England. In addition, there will be further individuals, estimated to be 5–30%, so amounting to up to another 124,500 people, who have been diagnosed with epilepsy, but in whom the diagnosis is incorrect. Incidence is estimated to be 50 per 100,000 per year and the prevalence of active epilepsy in the UK is estimated to be 5–10 cases per 1000. Two-thirds of people with active epilepsy have their epilepsy controlled satisfactorily with anti-epileptic drugs (AEDs). Other approaches may include surgery. Optimal management improves health outcomes and can also help to minimise other, often detrimental, impacts on social, educational and employment activity. 'The epilepsies' (NICE clinical guideline 20) stated that the annual estimated cost of established epilepsies was £2 billion (direct and indirect costs).
Newer and more expensive AEDs are being prescribed for people with epilepsy, and with an increase in treatment costs likely in coming years it is essential to ensure that AEDs with proven clinical and cost effectiveness are identified. New evidence regarding AEDs has been reviewed within 'Epilepsy' (NICE clinical guideline 137), and recommendations on AED treatment for epilepsy are included in this pathway. See pharmacological treatment tables for a summary of recommended pharmacological treatment based on epilepsy syndrome or seizure type.
This pathway assumes that prescribers will use a drug's summary of product characteristics to inform decisions made with individual patients.
This pathway recommends some drugs for indications for which they do not have a UK marketing authorisation at the date of publication, if there is good evidence to support that use. Where recommendations have been made for the use of drugs outside their licensed indications ('off-label use'), these drugs are marked with a footnote in the recommendations.

Updates

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.

Information about epilepsy

Information about drug treatments or devices

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Updates to this pathway

21 February 2014 Minor maintenance updates.
5 March 2013 The epilepsies in adults quality standard (QS26) and the epilepsies in children and young people quality standard (QS27) added to pathway.
31 July 2013 Minor maintenance updates.
15 February 2013 Minor maintenance updates.
21 December 2012 Minor maintenance updates.
12 October 2012 Minor maintenance updates.
24 February 2012 Minor maintenance updates.

Short Text

The epilepsies: diagnosis and management of the epilepsies in adults and children in primary and secondary care

What is covered

This pathway covers the diagnosis and management of the epilepsies in children, young people and adults in primary and secondary care.
Epilepsy is a common neurological disorder characterised by recurring seizures. Different types of epilepsy have different causes. Accurate estimates of incidence and prevalence are difficult to achieve because identifying people who may have epilepsy is difficult. Epilepsy has been estimated to affect between 362,000 and 415,000 people in England. In addition, there will be further individuals, estimated to be 5–30%, so amounting to up to another 124,500 people, who have been diagnosed with epilepsy, but in whom the diagnosis is incorrect. Incidence is estimated to be 50 per 100,000 per year and the prevalence of active epilepsy in the UK is estimated to be 5–10 cases per 1000. Two-thirds of people with active epilepsy have their epilepsy controlled satisfactorily with anti-epileptic drugs (AEDs). Other approaches may include surgery. Optimal management improves health outcomes and can also help to minimise other, often detrimental, impacts on social, educational and employment activity. 'The epilepsies' (NICE clinical guideline 20) stated that the annual estimated cost of established epilepsies was £2 billion (direct and indirect costs).
Newer and more expensive AEDs are being prescribed for people with epilepsy, and with an increase in treatment costs likely in coming years it is essential to ensure that AEDs with proven clinical and cost effectiveness are identified. New evidence regarding AEDs has been reviewed within 'Epilepsy' (NICE clinical guideline 137), and recommendations on AED treatment for epilepsy are included in this pathway. See pharmacological treatment tables for a summary of recommended pharmacological treatment based on epilepsy syndrome or seizure type.
This pathway assumes that prescribers will use a drug's summary of product characteristics to inform decisions made with individual patients.
This pathway recommends some drugs for indications for which they do not have a UK marketing authorisation at the date of publication, if there is good evidence to support that use. Where recommendations have been made for the use of drugs outside their licensed indications ('off-label use'), these drugs are marked with a footnote in the recommendations.

Sources

The NICE guidance that was used to create the pathway.
Epilepsy. NICE clinical guideline 137 (2012)

Quality standards

Quality statements

Referral to a specialist

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Rationale

Diagnosing epilepsy can be complex, and it has been estimated that misdiagnosis occurs in 5–30% of people. It is therefore crucial that specialists are involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis.

Quality measure

Structure
Evidence of local arrangements for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Process
a) Proportion of adults presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies.
Numerator – the number of people in the denominator who are seen by a specialist in the diagnosis and management of the epilepsies.
Denominator – the number of adults presenting with a suspected seizure.
b) Proportion of adults presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Numerator – the number of people in the denominator who are seen within 2 weeks of presentation.
Denominator – the number of adults presenting with a suspected seizure seen by a specialist in the diagnosis and management of the epilepsies.
Outcome
a) Diagnosis of epilepsy that is subsequently found to be incorrect.
b) Diagnosis of a condition that is subsequently found to be epilepsy.
c) Number of adults with a recorded seizure type and/or syndrome.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Healthcare professionals ensure that adults presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Commissioners ensure they commission services for adults presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Adults who have a suspected seizure are seen by a doctor with training and expertise in diagnosing and treating epilepsy within 2 weeks.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.4.5 (key priority for implementation), 1.4.1 and 1.4.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a), b) and c) Local data collection.

Definitions

A suspected epileptic seizure is a reported acute episode of altered functioning, presumed to be the direct result of a change in electrical activity in the brain, the nature of which raises concerns that a seizure has occurred.
A specialist in the diagnosis and management of the epilepsies is a medical practitioner (a consultant neurologist or consultant with epilepsy expertise), who has epilepsy as a significant part of their workload (at least the equivalent of 1 session a week) with training and continuing education in epilepsy, usually working as part of a specialist epilepsy team.

Investigations

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.

Rationale

The period between the suspected seizure occurring and diagnosis can be a particularly anxious time for patients and families and it is therefore important that investigations are conducted in a timely manner. The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated. Delays caused by a lack of available diagnostic equipment can lead to distress and impact negatively on the everyday lives of patients.

Quality measure

Structure
Evidence of local arrangements for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Process
Proportion of adults having initial investigations for epilepsy who undergo the tests within 4 weeks of them being requested.
Numerator – the number of people in the denominator who undergo the tests within 4 weeks of the request.
Denominator – the number of adults having initial investigations for epilepsy.
Outcome
Patient satisfaction with the length of time between tests being arranged and the tests being performed.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Healthcare professionals ensure that adults having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
Commissioners ensure they commission services for adults having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Adults having their first tests for epilepsy have the tests within 4 weeks of them being requested by the doctor.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.6.3 and 1.6.22.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

Initial investigations for epilepsy include electroencephalogram (EEG) and magnetic resonance imaging, as appropriate.
Tests such as long-term video or ambulatory EEG, which might be used in the assessment of adults in whom there are difficulties with diagnosis after clinical assessment and standard EEG, might not be possible within this timeframe.
Test results should be interpreted by practitioners who have the necessary competencies.
Information should be provided to adults and families and/or carers as appropriate on the reasons for the tests, their results and meaning, the requirements of specific investigations, and the logistics of obtaining them.

Equality and diversity considerations

Adults with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. The same services and investigations should be offered to adults with learning disabilities as are offered to the general population.

Magnetic resonance imaging

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging.

Rationale

Magnetic resonance imaging (MRI) is shown by evidence to be the most sensitive and specific neuroimaging option in terms of identifying structural abnormalities in the brain, but access to MRI scanning and reporting facilities varies across the country.

Quality measure

Structure
a) Evidence of local arrangements for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
b) Evidence of local arrangements for adults with learning disabilities who meet the criteria for neuroimaging for epilepsy to have MRI.
Process
Proportion of adults who meet the criteria for neuroimaging for epilepsy who have MRI.
Numerator – the number of people in the denominator who have MRI.
Denominator – the number of adults who meet the criteria for neuroimaging for epilepsy.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Healthcare professionals ensure that adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Commissioners ensure they commission services for adults who meet the criteria for neuroimaging for epilepsy to have MRI.
Adults who are having neuroimaging (taking pictures of the brain) for epilepsy have magnetic resonance imaging (a type of neuroimaging that uses magnetic fields to produce a picture of the brain; often shortened to MRI).

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.6.20.

Data source

Structure
a) and b) Local data collection.
Process
Local data collection.

Definitions

Neuroimaging should be used to identify structural abnormalities that cause certain epilepsies. People diagnosed with idiopathic generalised epilepsy are unlikely to have any aetiologically relevant structural abnormalities and should not therefore undergo neuroimaging.
The criteria for MRI in adults are new-onset epilepsy or failure of first-line medication, unless there is a clear diagnosis of idiopathic generalised epilepsy.
In acute situations computed tomography may be used to determine whether a seizure has been caused by an acute neurological lesion or illness.

Equality and diversity considerations

The same services, investigations and therapies should be offered to adults with learning disabilities or challenging behaviour as are offered to the general population.
Adults with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. Reasonable adjustment, such as offering open-bed scanners, sedation or general anaesthesia should be made if necessary to ensure all people who need MRI have access to it.

Epilepsy care plan

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with epilepsy have an agreed and comprehensive written epilepsy care plan.

Rationale

There are a number of potential lifestyle, health and wellbeing implications directly related to epilepsy. A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome and the treatment they are receiving are considered and addressed.

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy to have an agreed and comprehensive, written epilepsy care plan.
Process
a) Proportion of adults with epilepsy who have an agreed and comprehensive written epilepsy care plan.
Numerator – the number of people in the denominator who have an agreed and comprehensive written epilepsy care plan.
Denominator – the number of adults with epilepsy.
b) Proportion of adults with an epilepsy care plan who feel they have been involved in developing and agreeing their plan.
Numerator – the number of people in the denominator who feel they have been involved in developing and agreeing their plan.
Denominator – the number of adults with an epilepsy care plan.
Outcome
Patient satisfaction with involvement in the epilepsy care planning process.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Healthcare professionals ensure that adults with epilepsy have an agreed and comprehensive written epilepsy care plan.
Commissioners ensure they commission services for adults with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Adults with epilepsy have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues and is agreed between them and their healthcare team.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.3.1 and 1.8.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
Local data collection.

Definitions

The comprehensive epilepsy care plan should be a written record of the decisions made about the person's past, present and future care.
It should be discussed and agreed between the adult with epilepsy, their family and/or carers if appropriate and their primary and secondary health and social care professionals. A local template or checklist should be developed to ensure consistency in the content of each epilepsy care plan based on NICE clinical guideline 137 recommendation 1.3.1. The plan should be reviewed on at least annually.
The care plan should include any issues relating to the following topics (as listed in NICE clinical guideline 137 recommendation 1.3.1):
  • epilepsy in general
  • the person's specific epilepsy syndrome
  • diagnosis and treatment options
  • medication and side effects
  • seizure type(s), triggers and seizure control
  • management and self-care
  • risk management
  • first aid, safety and injury prevention at home and at college or work
  • psychological issues
  • social security benefits and social services
  • insurance issues
  • education and healthcare at college
  • employment and independent living for adults
  • importance of disclosing epilepsy in college or at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
  • road safety and driving
  • prognosis
  • sudden unexpected death in epilepsy (SUDEP; sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death)
  • status epilepticus
  • lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation)
  • family planning and pregnancy
  • voluntary organisations, such as support groups and charitable organisations, and how to contact them.

Equality and diversity considerations

Consideration should be given to the capacity of someone with epilepsy to be involved in agreeing their epilepsy care plan. Best interest decision making, in accordance with the Mental Capacity Act, should be adhered to.

Epilepsy specialist nurse

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Rationale

Epilepsy specialist nurses play a key role in supporting continuity of care between settings for people with epilepsy. There is some evidence that epilepsy specialist nurses improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care.

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Process
a) Proportion of adults with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.
Numerator – the number of adults in the denominator who have seen an epilepsy specialist nurse at diagnosis.
Denominator – the number of adults with epilepsy.
b) Proportion of adults with epilepsy who have seen an epilepsy specialist nurse at their review.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at their review.
Denominator – the number of adults with epilepsy.
c) Proportion of adults with epilepsy who have the contact details of a named epilepsy specialist nurse.
Numerator – the number of adults in the denominator who have the contact details of a named epilepsy specialist nurse.
Denominator – the number of adults with epilepsy.
Outcome
Patient satisfaction with access to epilepsy specialist nursing.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Healthcare professionals ensure that adults with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Commissioners ensure they commission services for adults with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Adults with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they can contact between scheduled reviews.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.8.3.

Data source

Structure
Local data collection.
Process
a), b) and c) Local data collection.
Outcome
Local data collection.

Definitions

The role of the epilepsy specialist nurse is described in NICE clinical guideline 137 recommendation 1.8.3 as: to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the adult, and their families or carers where appropriate.
Epilepsy specialist nursing may be provided in a number of different teams, for example the learning disabilities team.
At diagnosis in this context means within 3 months of the epilepsy diagnosis being confirmed.

Prolonged or repeated seizures

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with a history of prolonged or repeated seizures have an agreed written emergency care plan.

Rationale

An emergency care plan is an important tool in improving the quality of emergency care in the community. It ensures that previous incidents and the agreed treatment strategies are taken into account by healthcare professionals. It also provides guidance for family members or carers who may need to administer emergency treatment. The timely and appropriate management of a prolonged or repeated seizure may significantly reduce the risk of mortality and morbidity (long-term complications) known to be associated with prolonged or repeated seizures.

Quality measure

Structure
Evidence of local arrangements for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Process
Proportion of adults with a history of prolonged or repeated seizures who have an agreed written emergency care plan.
Numerator – the number of people in the denominator who have an agreed written emergency care plan.
Denominator – the number of adults with a history of prolonged or repeated seizures.
Outcome
a) Accident and emergency attendances for prolonged or repeated seizures.
b) Hospital admissions for prolonged or repeated seizures.
c) Patient satisfaction with emergency care for prolonged or repeated seizures.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Healthcare professionals ensure that adults with a history of prolonged or repeated seizures have an agreed written emergency care plan.
Commissioners ensure they commission services for adults with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Adults who have had a prolonged seizure (a seizure that lasted 5 minutes or longer) or repeated seizures (3 or more seizures within 1 hour) have a written emergency care plan agreed with their healthcare team that sets out how they should be cared for if they have prolonged or repeated seizures again.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.14.1.4.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) Hospital episode statistics contain the data necessary for the monitoring of accident and emergency attendances
b) and c) Local data collection.

Definitions

An agreed written emergency care plan should describe what happens in the event of a prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when. It should be agreed between the adult with epilepsy, their family and/or carers if appropriate and their primary and secondary healthcare professionals. Family members and/or carers of adults with epilepsy will need training in order to initiate treatment at home or in the community when necessary. The plan should be reviewed at least annually.
Prolonged seizures are seizures that last 5 minutes or more.
Repeated seizures are seizures that occur 3 times or more within 1 hour.
Any adult with epilepsy who has experienced a prolonged or repeated seizure is considered to have a history of prolonged or repeated seizures.

Referral to tertiary care

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.

Rationale

Tertiary referrals can be vital for a number of reasons such as diagnostic uncertainty, specialised advice on drugs, surgery, epilepsy combined with other complicated medical conditions or psychological problems. Timely and appropriate access to tertiary services remains variable across the country.

Quality measure

Structure
Evidence of local arrangements for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Process
Proportion of adults who meet the criteria for referral to a tertiary care specialist who are seen within 4 weeks of referral.
Numerator – the number of people in the denominator who are seen within 4 weeks of referral.
Denominator – the number of adults who meet the criteria for referral to a tertiary care specialist.
Outcome
Patient satisfaction with referral to a tertiary care specialist.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Healthcare professionals ensure that adults who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
Commissioners ensure they commission services for adults who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Adults who meet the criteria for referral to a tertiary care specialist (someone who works as part of a specialist centre with a team of healthcare professionals experienced in assessing epilepsy that is hard to treat or complicated) are seen within 4 weeks of referral.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.10.2.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

NICE clinical guideline 137 recommends that referral to tertiary services should be considered when one or more of the following criteria are present:
  • The epilepsy is not controlled with medication within 2 years of onset.
  • Management is unsuccessful after 2 drugs.
  • The adult experiences, or is at risk of, unacceptable side effects from medication.
  • There is a unilateral structural lesion.
  • There is psychological or psychiatric comorbidity.
  • There is diagnostic doubt as to the nature of the seizures or the seizure syndrome.
A tertiary care specialist in epilepsy is an adult or paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.

Re-access to specialist care

This quality statement is taken from the epilepsies in adults quality standard. The quality standard defines clinical best practice in epilepsy care for adults and should be read in full.

Quality statement

Adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.

Rationale

People living with epilepsy may need to seek expert opinion if there are changes in their medical situation or they have lifestyle issues that are affected by their epilepsy or its treatment. It is important that they are able to have timely reviews by specialists to address any issues and receive accurate information to help them make informed choices.

Quality measure

Structure
Evidence of local arrangements for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Process
Proportion of adults with epilepsy who have medical or lifestyle issues that need review who are referred to specialist epilepsy services.
Numerator – the number of people in the denominator who are referred to specialist epilepsy services.
Denominator – the number of adults with epilepsy who have medical or lifestyle issues that need review.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Healthcare professionals ensure that adults with epilepsy who have medical or lifestyle issues that need review are referred to specialist epilepsy services.
Commissioners ensure they commission services for adults with epilepsy who have medical or lifestyle issues that need review to be referred to specialist epilepsy services.
Adults with epilepsy who continue to have seizures, have side effects from medication or need specialist advice (for example, a woman who is planning a pregnancy) are referred to specialist epilepsy services for a review.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.20.7 (key priority for implementation).

Data source

Structure
Local data collection.
Process
Local data collection.

Definitions

Medical or lifestyle issues that need review by a specialist include:
  • diagnostic uncertainty
  • pregnancy
  • consideration of drug withdrawal
  • recurrence of seizures
  • side effects of medication.
Any healthcare professional the person with epilepsy sees may determine that they need a specialist review, for example a GP, nurse or hospital doctor.
Specialist epilepsy services include secondary care services, tertiary services and specialist epilepsy nursing, which may be based in the community. The service that is most appropriate to provide the review will depend on the particular medical or lifestyle issue.
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Referral to a specialist

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.

Rationale

Diagnosing epilepsy can be complex, and it has been estimated that misdiagnosis occurs in 5–30% of people. It is therefore crucial that specialists are involved early in diagnosing epilepsy and that they take great care to establish the correct diagnosis.

Quality measure

Structure
Evidence of local arrangements for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Process
a) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies.
Numerator – the number of people in the denominator who are seen by a specialist in the diagnosis and management of the epilepsies.
Denominator – the number of children and young people presenting with a suspected seizure.
b) Proportion of children and young people presenting with a suspected seizure who are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Numerator – the number of people in the denominator who are seen within 2 weeks of presentation.
Denominator – the number of children and young people presenting with a suspected seizure seen by a specialist in the diagnosis and management of the epilepsies.
Outcome
a) Diagnosis of epilepsy that is subsequently found to be incorrect.
b) Diagnosis of a condition that is subsequently found to be epilepsy.
c) Number of children and young people with a recorded seizure type and/or syndrome.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Healthcare professionals ensure that children and young people presenting with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Commissioners ensure they commission services for children and young people presenting with a suspected seizure to be seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
Children and young people who have a suspected seizure are seen by a doctor with training and expertise in diagnosing and treating epilepsy within 2 weeks.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.4.6 (key priority for implementation), 1.4.1 and 1.4.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a) Organisations can collect data on the percentage of children where there is evidence that a diagnosis of epilepsy (2 or more epileptic seizures) was made and then later withdrawn at any time during 12 months after first paediatric assessment using section 3.10 of the Epilepsy12 national audit.
b) Local data collection.
c) Organisations can collect data on the diagnosis made by the paediatric team by the end of the 12 months after first paediatric assessment using section 3.9 of the Epilepsy12 national audit.

Definitions

A suspected epileptic seizure is a reported acute episode of altered functioning, presumed to be the direct result of a change in electrical activity in the brain, the nature of which raises concerns that a seizure has occurred.
A specialist in the diagnosis and management of the epilepsies in children and young people is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health, or worked for a minimum of 6 months in a tertiary centre for neurology in children and attended appropriate paediatric epilepsy training courses. The care of the specialist’s patients with epilepsy should be part of an ongoing peer review process related to epilepsy care.

Investigations

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.

Rationale

The period between the suspected seizure occurring and diagnosis can be a particularly anxious time for patients and families and it is therefore important that investigations are conducted in a timely manner. The earlier a correct diagnosis of epilepsy is made, the sooner tailored therapy can be initiated. Delays caused by a lack of available diagnostic equipment can lead to distress and impact negatively on the everyday lives of patients.

Quality measure

Structure
Evidence of local arrangements for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Process
Proportion of children and young people having initial investigations for epilepsy who undergo the tests within 4 weeks of them being requested.
Numerator – the number of people in the denominator who undergo the tests within 4 weeks of the request.
Denominator – the number of children and young people having initial investigations for epilepsy.
Outcome
Patient or parent/carer satisfaction with the length of time between tests being arranged and the tests being performed.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Healthcare professionals ensure that children and young people having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
Commissioners ensure they commission services for children and young people having initial investigations for epilepsy to undergo the tests within 4 weeks of them being requested.
Children and young people having their first tests for epilepsy have the tests within 4 weeks of them being requested by the doctor.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.6.3 and 1.6.22.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

Initial investigations for epilepsy include electroencephalogram (EEG) and magnetic resonance imaging, as appropriate.
Tests such as long-term video or ambulatory EEG, which might be used in the assessment of children and young people in whom there are difficulties with diagnosis after clinical assessment and standard EEG, might not be possible within this timeframe.
Test results should be interpreted by practitioners who have the necessary competencies.
Information should be provided to children and young people, and their families and/or carers as appropriate, on the reasons for the tests, their results and meaning, the requirements of specific investigations, and the logistics of obtaining them.

Equality and diversity considerations

Very young children, or children and young people with learning disabilities or challenging behaviour, might need particular care and attention to help them tolerate investigations. The same services and investigations should be offered to children and young people with learning disabilities as are offered to the general population.

Magnetic resonance imaging

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people who meet the criteria for neuroimaging for epilepsy have magnetic resonance imaging.

Rationale

Magnetic resonance imaging (MRI) is shown by evidence to be the most sensitive and specific neuroimaging option in terms of identifying structural abnormalities in the brain, but access to MRI scanning and reporting facilities varies across the country.

Quality measure

Structure
a) Evidence of local arrangements for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
b) Evidence of local arrangements for children and young people with learning disabilities who meet the criteria for neuroimaging for epilepsy to have MRI.
Process
Proportion of children and young people who meet the criteria for neuroimaging for epilepsy who have MRI.
Numerator – the number of people in the denominator who have MRI.
Denominator – the number of children and young people who meet the criteria for neuroimaging for epilepsy.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
Healthcare professionals ensure that children and young people who meet the criteria for neuroimaging for epilepsy have MRI.
Commissioners ensure they commission services for children and young people who meet the criteria for neuroimaging for epilepsy to have MRI.
Children and young people who are having neuroimaging (taking pictures of the brain) for epilepsy have magnetic resonance imaging (a type of neuroimaging that uses magnetic fields to produce a picture of the brain; often shortened to MRI).

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.6.20.

Data source

Structure
a) and b) Local data collection.
Process
Local data collection. Organisations can collect data on the percentage of children with defined indications for MRI who had MRI within 1 year using section 9a of the Epilepsy12 national audit.

Definitions

Neuroimaging should be used to identify structural abnormalities that cause certain epilepsies. People diagnosed with idiopathic generalised epilepsy or benign epilepsy with centrotemporal spikes are unlikely to have any aetiologically relevant structural abnormalities and should not therefore undergo neuroimaging.
The criteria for MRI in children and young people are newly diagnosed epilepsy in a child aged under 2 years, epilepsy with focal onset (unless there is evidence of benign epilepsy with centrotemporal spikes) and failure of first-line medication.
In acute situations computed tomography may be used to determine whether a seizure has been caused by an acute neurological lesion or illness. Computed tomography should be used for children and young people for whom a general anaesthetic or sedation would be needed for MRI but would not be needed for computed tomography.

Equality and diversity considerations

The same services, investigations and therapies should be offered to children and young people with learning disabilities or challenging behaviour as are offered to the general population.
Children and young people with learning disabilities or challenging behaviour might need particular care and attention to help them tolerate investigations. Reasonable adjustments, such as offering open-bed scanners, sedation or general anaesthesia, should be made if necessary to ensure all children and young people who need MRI have access to it.
Good communication and a supportive environment are important in helping children to undergo investigative tests. Play therapy may also have a role in supporting children having neuroimaging for epilepsy.

Epilepsy care plan

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.

Rationale

There are a number of potential lifestyle, health and wellbeing implications directly related to epilepsy. A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome and the treatment they are receiving are considered and addressed.

Quality measure

Structure
Evidence of local arrangements for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Process
a) Proportion of children and young people with epilepsy who have an agreed and comprehensive written epilepsy care plan.
Numerator – the number of people in the denominator who have an agreed and comprehensive written epilepsy care plan.
Denominator – the number of children and young people with epilepsy.
b) Proportion of children and young people with an epilepsy care plan, or their parents or carers who feel they have been involved in developing and agreeing their plan.
Numerator – the number of people in the denominator, or their parents or carers, who feel they have been involved in developing and agreeing their plan.
Denominator – the number of children and young people with an epilepsy care plan.
Outcome
a) Patient or parent/carer satisfaction with involvement in the epilepsy care planning process.
b) Parent/carer satisfaction with involvement in the epilepsy care planning process.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Healthcare professionals ensure that children and young people with epilepsy have an agreed and comprehensive written epilepsy care plan.
Commissioners ensure they commission services for children and young people with epilepsy to have an agreed and comprehensive written epilepsy care plan.
Children and young people with epilepsy or carers have a written epilepsy care plan that includes details about treatment and any preferences and lifestyle issues, and is agreed between them (and their parents or carers if appropriate) and their healthcare team.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.3.1 and 1.8.2.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
a) and b) Local data collection.

Definitions

The comprehensive epilepsy care plan should be a written record of the decisions made about the child's or young person's past, present and future care.
It should be discussed and agreed between the child or young person with epilepsy, their parents and/or carers and their primary and secondary health and social care professionals. A local template or checklist should be developed to ensure consistency in the content of each epilepsy care plan based on NICE clinical guideline 137 recommendation 1.3.1. The plan should be reviewed on at least annually.
The care plan should include any issues relating to the following topics (as listed in NICE clinical guideline 137 recommendation 1.3.1):
  • epilepsy in general
  • the child's or young person's specific epilepsy syndrome
  • diagnosis and treatment options
  • medication and side effects
  • seizure type(s), triggers and seizure control
  • management and self-care
  • risk management
  • first aid, safety and injury prevention at home and at school or work
  • psychological issues
  • social security benefits and social services
  • insurance issues
  • education and healthcare at college
  • importance of disclosing epilepsy in college or at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
  • road safety and driving
  • prognosis
  • sudden unexpected death in epilepsy (SUDEP; sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death)
  • status epilepticus
  • lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation)
  • family planning and pregnancy
  • voluntary organisations, such as support groups and charitable organisations, and how to contact them.

Equality and diversity considerations

Consideration should be given to the capacity of someone with epilepsy to be involved in agreeing their epilepsy care plan. Best interest decision making, in accordance with the Mental Capacity Act, should be adhered to.

Epilepsy specialist nurse

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.

Rationale

Epilepsy specialist nurses play a key role in supporting continuity of care between settings for people with epilepsy. There is some evidence that epilepsy specialist nurses improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care.

Quality measure

Structure
Evidence of local arrangements for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Process
a) Proportion of children and young people with epilepsy who have seen a named epilepsy specialist nurse at diagnosis.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at diagnosis.
Denominator – the number of children and young people with epilepsy.
b) Proportion of children and young people with epilepsy who have seen an epilepsy specialist nurse at their review.
Numerator – the number of people in the denominator who have seen an epilepsy specialist nurse at their review.
Denominator – the number of children and young people with epilepsy.
c) Proportion of children and young people with epilepsy who have the contact details of a named epilepsy specialist nurse.
Numerator – the number of children and young people in the denominator who have the contact details of a named epilepsy specialist nurse.
Denominator – the number of children and young people with epilepsy.
Outcome
Patient or parent/carer satisfaction with access to epilepsy specialist nursing.

Description of what the quality statement means for each audience

Service providers ensure that systems are in place for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Health and social care professionals ensure that children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Commissioners ensure they commission services for children and young people with epilepsy to be seen by an epilepsy specialist nurse who they can contact between scheduled reviews.
Children and young people with epilepsy see an epilepsy specialist nurse (a nurse who has training and experience in caring for people with epilepsy) who they or their parent/carer can contact between scheduled reviews.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.8.3.

Data source

Structure
Local data collection.
Process
a), b) and c) Local data collection. Organisations can collect data on the percentage of children with evidence of input by, or referral to, an epilepsy specialist nurse within 1 year using section 2 of the Epilepsy12 national audit.
Outcome
Local data collection.

Definitions

The role of the epilepsy specialist nurse is described in NICE clinical guideline 137 recommendation 1.8.3 as: to support both epilepsy specialists and generalists, to ensure access to community and multi-agency services and to provide information, training and support to the child, young person or adult, families, carers and, in the case of children, others involved in the child's education, welfare and wellbeing.
Epilepsy specialist nursing may be provided in a number of different teams, for example the learning disabilities team.
At diagnosis in this context means within 3 months of the epilepsy diagnosis being confirmed.

Prolonged or repeated seizures

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.

Rationale

An emergency care plan is an important tool in improving the quality of emergency care in the community. It ensures that previous incidents and the agreed treatment strategies are taken into account by healthcare professionals. It also provides guidance for family members or carers who may need to administer emergency treatment. The timely and appropriate management of a prolonged or repeated seizure may significantly reduce the risk of mortality and morbidity (long-term complications) known to be associated with prolonged or repeated seizures.

Quality measure

Structure
Evidence of local arrangements for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Process
Proportion of children and young people with a history of prolonged or repeated seizures who have an agreed written emergency care plan.
Numerator – the number of people in the denominator who have an agreed written emergency care plan.
Denominator – the number of children and young people with a history of prolonged or repeated seizures.
Outcome
a) Accident and emergency attendances for prolonged or repeated seizures.
b) Hospital admissions for prolonged or repeated seizures.
c) Patient or parent/carer satisfaction with emergency care for prolonged or repeated seizures.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Healthcare professionals ensure that children and young people with a history of prolonged or repeated seizures have an agreed written emergency care plan.
Commissioners ensure they commission services for children and young people with a history of prolonged or repeated seizures to have an agreed written emergency care plan.
Children and young people who have had a prolonged seizure (a seizure that lasted 5 minutes or longer) or repeated seizures (3 or more seizures within 1 hour) have a written emergency care plan agreed between them, their parents or carers and their healthcare team that sets out how they should be cared for if they have prolonged or repeated seizures again.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.14.1.4.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) Hospital episode statistics contain the data necessary for the monitoring of accident and emergency attendances.
b) and c) Local data collection.

Definitions

An agreed written emergency care plan should describe what happens in the event of a prolonged or repeated seizure, including pharmacological treatment that should be given and actions to take, who to contact and when. It should be agreed between the child or young person with epilepsy, their family and/or carers if appropriate and their primary and secondary healthcare professionals. Family members and/or carers of children and young people with epilepsy will need training to initiate treatment at home or in the community when necessary. The plan should be reviewed at least annually.
Prolonged seizures are seizures that last 5 minutes or more.
Repeated seizures are seizures that occur 3 times or more within 1 hour.
Any child or young person with epilepsy who has experienced a prolonged or repeated seizure is considered to have a history of prolonged or repeated seizures.

Referral to tertiary care

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.

Rationale

Tertiary referrals can be vital for a number of reasons such as diagnostic uncertainty, specialised advice on drugs, surgery, epilepsy combined with other complicated medical conditions or psychological problems. Timely and appropriate access to tertiary services remains variable across the country.

Quality measure

Structure
Evidence of local arrangements for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Process
Proportion of children and young people who meet the criteria for referral to a tertiary care specialist who are seen within 4 weeks of referral.
Numerator – the number of people in the denominator who are seen within 4 weeks of referral.
Denominator – the number of children and young people who meet the criteria for referral to a tertiary care specialist.
Outcome
Patient or parent/carer satisfaction with referral to tertiary care specialist.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Healthcare professionals ensure that children and young people who meet the criteria for referral to a tertiary care specialist are seen within 4 weeks of referral.
Commissioners ensure they commission services for children and young people who meet the criteria for referral to a tertiary care specialist to be seen within 4 weeks of referral.
Children and young people who meet the criteria for referral to a tertiary care specialist (someone who works as part of a specialist centre with a team of healthcare professionals experienced in assessing epilepsy that is hard to treat or complicated) are seen within 4 weeks of referral.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.10.2.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
Local data collection.

Definitions

NICE clinical guideline 137 recommends that referral to tertiary services should be considered when 1 or more of the following criteria are present:
  • The epilepsy is not controlled with medication within 2 years of onset.
  • Management is unsuccessful after 2 drugs.
  • The child is under 2 years of age.
  • The child or young person experiences, or is at risk of, unacceptable side effects from medication.
  • There is a unilateral structural lesion.
  • There is psychological or psychiatric comorbidity.
  • There is diagnostic doubt as to the nature of the seizures or the seizure syndrome.
A tertiary care specialist in epilepsy is an adult or paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.

Review

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.

Rationale

Reviews are important in ensuring that ongoing interventions are effective in meeting the needs of children and young people and to identify any changes in how their epilepsy is being controlled. They also ensure that epilepsy care plans remain relevant and up-to-date.

Quality measure

Structure
Evidence of local arrangements for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Process
Proportion of children and young people with epilepsy whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.
Numerator – the number of people in the denominator whose most recent structured review with a paediatric epilepsy specialist was no later than 1 year (or individually agreed interval) after their previous review.
Denominator – the number of children and young people with epilepsy.
Outcome
a) Patient or parent/carer satisfaction with review content.
b) Patient or parent/carer satisfaction with the frequency of the review.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Health and social care professionals ensure that children and young people with epilepsy have a structured review with a paediatric epilepsy specialist at least annually.
Commissioners ensure they commission services for children and young people with epilepsy to have a structured review with a paediatric epilepsy specialist at least annually.
Children and young people with epilepsy meet with a paediatric epilepsy specialist (a doctor who treats and cares for children and who has also had special training in diagnosing and treating epilepsy) at least once every year to talk about their treatment and any other problems they might be having with their epilepsy.

Source clinical guideline references

NICE clinical guideline 137 recommendations 1.20.3 and 1.20.5.

Data source

Structure
Local data collection.
Process
Local data collection.
Outcome
a) and b) Local data collection.

Definitions

A structured review should cover all aspects of the child's or young person's epilepsy care plan. The physical, psychological and social needs of children and young people with epilepsy should always be considered by healthcare professionals. Attention should be paid to their relationships with family and friends, and at school.
For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child's or young person's epilepsy, their wishes and the wishes of their family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the paediatric epilepsy specialist, but is likely to be between 3 and 12 months.
A paediatric epilepsy specialist in the management of the epilepsies is a paediatrician with training and expertise in epilepsy who has, for example, completed the specialist training module on epilepsy developed by the Royal College of Paediatrics and Child Health or worked for a minimum of 6 months in a tertiary centre for epilepsy in children and attended appropriate paediatric epilepsy training courses. The care of the specialist's patients with epilepsy should be part of an ongoing peer review process related to epilepsy care.

Transition from children's to adult services

This quality statement is taken from the epilepsies in children and young people quality standard. The quality standard defines clinical best practice in epilepsy care for children and young people and should be read in full.

Quality statement

Young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.

Rationale

The need for continuity of care during transition from paediatric to adult services is particularly important for young people managing the physical and mental transition from adolescence to adulthood. Good management of this transition period by healthcare professionals is vital to develop and maintain the self-esteem and confidence of the adolescent with epilepsy. It also provides an important opportunity to review the diagnosis, classification, cause and management of a young person's epilepsy before they enter adulthood.

Quality measure

Structure
Evidence of local arrangements for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
Process
Proportion of young people with epilepsy who are being discharged from paediatric epilepsy services who had an agreed transition period between paediatric and adult services.
Numerator – the number of people in the denominator who had an agreed transition period between paediatric and adult services.
Denominator – the number of young people with epilepsy who are no longer being cared for by paediatric services.
Outcome
Young people's experience of transition to adult services.

Description of what the quality statement means for each audience

Service providers ensure systems are in place for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
Healthcare professionals ensure young people with epilepsy have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
Commissioners ensure they commission services for young people with epilepsy to have an agreed transition period during which their continuing epilepsy care is reviewed jointly by paediatric and adult services.
Young people with epilepsy who are changing over from children's to adult healthcare services have a period of time when they are supported by both children's and adult services so that the changeover is handled smoothly.

Source clinical guideline references

NICE clinical guideline 137 recommendation 1.17.5.

Data source

Structure
Local data collection.
Process
a) and b) Local data collection.
Outcome
Local data collection.

Definitions

The purpose of the joint review is to optimise care and treatment for young people with epilepsy and help their move into adult services.
The period of transition should be a joint clinical action between paediatric and adults services, with at least 1 meeting at a joint consultation and a clear action plan for conducting a review after the young person has transferred into adult services.

Equality and diversity considerations

People with learning disabilities might need a longer transition period to accommodate the additional complexity of their clinical and psychological needs. In addition, people with learning disabilities might remain in paediatric services for longer than those without learning disabilities, depending on their personal preferences, ability to manage their own condition and clinical needs.

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

Commissioning

These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.

Education and learning

NICE produces resources for individual practitioners, teams and those with a role in education to help improve and assess users' knowledge of relevant NICE guidance and its application in practice.

Pathway information

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.

Information about epilepsy

Information about drug treatments or devices

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Updates to this pathway

21 February 2014 Minor maintenance updates.
5 March 2013 The epilepsies in adults quality standard (QS26) and the epilepsies in children and young people quality standard (QS27) added to pathway.
31 July 2013 Minor maintenance updates.
15 February 2013 Minor maintenance updates.
21 December 2012 Minor maintenance updates.
12 October 2012 Minor maintenance updates.
24 February 2012 Minor maintenance updates.

Supporting information

Licensing indications

Detailed below are the anti-epileptic drugs (AEDs) that have been recommended in this pathway but that do not currently have licensed indications for these seizures types or syndromes or particular populations.
Seizure type/syndrome
Drug
Details of licensing
Treatment of refractory focal seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Eslicarbazepine acetate
At the time of publication, eslicarbazepine acetate did not have UK marketing authorisation for use in children younger than 18 years. It was not recommended owing to a lack of data on safety and efficacy (SPC).
Gabapentin
At the time of publication, gabapentin did not have UK marketing authorisation for use in children younger than 6 years and at doses over 50 mg/kg daily in children younger than 12 years (BNFC). The use of gabapentin was not recommended in children younger than 6 years owing to the lack of sufficient supporting data (SPC).
Pregabalin
At the time of publication, pregabalin did not have UK marketing authorisation for use in children (BNF). Pregabalin was not recommended for use in children younger than 12 years and adolescents (12–17 years) owing to insufficient data on safety and efficacy (SPC).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in children younger than 18 years owing to insufficient data on safety and efficacy (SPC).
GTC
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Oxcarbazepine
At the time of publication, oxcarbazepine did not have UK marketing authorisation for GTC seizures (BNF). It had authorisation for focal seizures with or without secondary GTC seizures (BNF).
Absence seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine had UK marketing authorisation for monotherapy of typical absence seizures for those aged 2–12 years only. There was not authorisation outside of this age range (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for use in absence seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in absence seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in absence seizures. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Myoclonic seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for monotherapy use in myoclonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in myoclonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in myoclonic seizures. It had authorisation for use in adjunctive treatment of refractory focal seizures with or without secondary generalisation (BNF).
Tonic or atonic seizures
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in tonic or atonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures, GTC seizures and seizures associated with Lennox–Gastaut syndrome. It also had authorisation for monotherapy of typical absence seizures for children aged 2–12 years (BNF, BNFC).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in tonic or atonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Infantile spasms
ACTH (tetracosactide)
At the time of publication, ACTH (tetracosactide) did not have UK marketing authorisation for infantile spasms. Depot ampoules are not recommended in infants and children younger than 3 years owing to the presence of benzyl alcohol in the formulation (SPC).
Lennox–Gastaut syndrome
Felbamate
At the time of publication, felbamate did not have UK marketing authorisation. There was no SPC available.
Dravet syndrome
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children under 3 years of age (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in Dravet syndrome. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type)
Carbamazepine
At the time of publication, carbamazepine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal and GTC seizures (BNF).
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Eslicarbazepine acetate
At the time of publication, eslicarbazepine acetate did not have UK marketing authorisation for use in children younger than 18 years. It was not recommended owing to a lack of data on safety and efficacy (SPC).
Gabapentin
At the time of publication, gabapentin did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for use in focal seizures with and without secondary generalisation (BNF) but it did not have UK marketing authorisation for use in children younger than 6 years and at doses over 50 mg/kg daily in children younger than 12 years (BNFC). The use of gabapentin was not recommended in children younger than 6 years owing to the lack of sufficient supporting data (SPC).
Lacosamide
At the time of publication, lacosamide did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for adjunctive treatment of focal seizures with or without secondary generalisation (BNF).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNFC).
Oxcarbazepine
At the time of publication, oxcarbazepine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal seizures with or without secondary GTC seizures (BNF).
Pregabalin
At the time of publication, pregabalin did not have UK marketing authorisation for use in children (BNF). Pregabalin was not recommended for use in children younger than 12 years and adolescents (12–17 years) owing to insufficient data on safety and efficacy (SPC).
Tiagabine
At the time of publication, tiagabine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal seizures with or without secondary generalisation that are not satisfactorily controlled by other antiepileptics (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox-Gastaut syndrome (BNF).
Vigabatrin
At the time of publication, vigabatrin did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome. It can be prescribed in combination with other epileptic treatment for focal epilepsy with or without secondary generalisation (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
IGE
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in IGE. It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for IGE. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in IGE. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in IGE. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
JME
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in juvenile myoclonic epilepsy. It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for monotherapy use in JME. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in JME. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in JME. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Absence syndromes
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine had UK marketing authorisation for monotherapy of typical absence seizures for those aged 2–12 years only. There was no authorisation outside this age range (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for use in absence syndromes. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in absence syndromes. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in absence syndromes. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Status epilepticus
Propofol
At the time of publication, propofol did not have UK marketing authorisation for status epilepticus but had authorisation for anaesthesia and sedation. Diprivan 2%, Propofol-Lipuro 2%, and Propoven 2% were not licensed for use in children younger than 3 years; Diprofusor TCI ('target controlled infusion') system was not licensed for use in children (BNFC).
Thiopental sodium
At the time of publication, thiopental sodium did not have UK marketing authorisation for status epilepticus (only if other measures fail, see section 4.8.2 in BNF), by slow intravenous injection (BNF). It is authorised for convulsive states: 75 to 125 mg (3 to 5 ml of a 2.5% solution) given by intravenous infusion (SPC).
Midazolam
At the time of publication, midazolam injection did not have UK marketing authorisation for status epilepticus (BNF, BNFC).
Diazepam
At the time of publication, diazepam did not have UK marketing authorisation for the use of Rectubes and Stesolid Rectal Tubes in children younger than 1 year (BNFC).
Abbreviations: BECTS, benign epilepsy with centrotemporal spikes; BNF, British national formulary; BNFC, British national formulary for children; GTC, generalised tonic–clonic; IGE, idiopathic generalised epilepsy; JME, juvenile myoclonic epilepsy; SPC, summary of product characteristics.

Differences in recommendations for helping people to cope with epilepsy

Recommendations specific for children and young people

In children and young people, self-management of epilepsy may be best achieved through active child-centred training models and interventions.

Recommendations specific for adults

Adults should receive appropriate information and education about all aspects of epilepsy. This may be best achieved and maintained through structured self-management plans.

Differences in recommendations for what to do after a first seizure

Recommendations specific for children and young people

The information that should be obtained from the child or young person and/or parent or carer after a suspected seizure is contained in appendix D of the epilepsy NICE guideline.
It is recommended that all children and young people who have had a first non-febrile seizure should be seen as soon as possibleThe Guideline Development Group considered that with a recent onset suspected seizure, referrals should be urgent, meaning that patients should be seen within 2 weeks. by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.

Recommendations specific for adults

The information that should be obtained from the adult and/or family or carer after a suspected seizure is contained in appendix D of the epilepsy NICE guideline.
It is recommended that all adults having a first seizure should be seen as soon as possible by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.

Differences in recommendations when diagnosing epilepsy

Recommendations specific for children and young people

The diagnosis of epilepsy in children and young people should be established by a specialist paediatrician with training and expertise in epilepsy.

Recommendations specific for adults

The diagnosis of epilepsy in adults should be established by a specialist medical practitioner with training and expertise in epilepsy.

Recommendations on where to perform investigations for children

All investigations for children should be performed in a child-centred environment.

Differences in recommendations for using an EEG when diagnosing epilepsy

Recommendations specific for children and young people

An electroencephalogram (EEG) should be performed only to support a diagnosis of epilepsy in children and young people. If an EEG is considered necessary, it should be performed after the second epileptic seizure but may, in certain circumstances, as evaluated by the specialist, be considered after a first epileptic seizure.
In children and young people, a sleep EEG is best achieved through sleep deprivation or the use of melatonin.

Recommendations specific for adults

An EEG should be performed only to support a diagnosis of epilepsy in adults in whom the clinical history suggests that the seizure is likely to be epileptic in origin.

Differences in recommendations for the use of neuroimaging when investigating the cause of epilepsy

Recommendations specific for children and young people

Computed tomography (CT) should be used to identify underlying gross pathology if magnetic resonance imaging (MRI) is not available or is contraindicated, and for children or young people in whom a general anaesthetic or sedation would be required for MRI but not CT.

Differences in recommendations for the use of blood tests and other investigations when investigating the cause of epilepsy

Recommendations specific for children and young people

In children and young people, other investigations, including blood and urine biochemistry, should be undertaken at the discretion of the specialist to exclude other diagnoses, and to determine an underlying cause of the epilepsy.

Recommendations specific for adults

In adults, appropriate blood tests (for example, plasma electrolytes, glucose, calcium) to identify potential causes and/or to identify any significant comorbidity should be considered.

Differences in recommendations for using an ECG when diagnosing epilepsy

Recommendations specific for children and young people

In children and young people, a 12-lead electrocardiogram (ECG) should be considered in cases of diagnostic uncertainty.

Recommendations specific for adults

A 12-lead ECG should be performed in adults with suspected epilepsy.

Differences in recommendations when starting treatment AEDs

Recommendations specific for children and young people

Anti-epileptic drug (AED) therapy in children and young people should be initiated by a specialist.

Recommendations specific for adults

AED therapy should be initiated in adults on the recommendation of a specialist.

Differences in recommendations for continuing treatment with AEDs

Recommendations specific for children and young people

Regular blood test monitoring in children and young people is not recommended as routine, and should be done only if clinically indicated and recommended by the specialist.

Recommendations specific for adults

Regular blood test monitoring in adults is not recommended as routine, and should be done only if clinically indicated.

Recommendations for referral to tertiary care that are specific for children

In children, the diagnosis and management of epilepsy within the first few years of life may be extremely challenging. For this reason, children with suspected epilepsy should be referred to tertiary services early, because of the profound developmental, behavioural and psychological effects that may be associated with continuing seizures.

Differences in recommendations for the use of psychological interventions

Recommendations specific for children and young people

Psychological interventions (relaxation, cognitive behaviour therapy) may be used in children and young people with drug-resistant focal epilepsy.

Recommendations specific for adults

Psychological interventions (relaxation, cognitive behaviour therapy, biofeedback) may be used in conjunction with anti-epileptic drug (AED) therapy in adults where either the person or the specialist considers seizure control to be inadequate with optimal AED therapy. This approach may be associated with an improved quality of life in some people.

Differences in recommendations for the use of the ketogenic diet

Recommendations specific for children and young people

Refer children and young people with epilepsy whose seizures have not responded to appropriate anti-epileptic drugs (AEDs) to a tertiary paediatric epilepsy specialist for consideration of the use of a ketogenic diet.

Recommendations specific for adults

No recommendation has been made for adults.

Differences in recommendations for treating refractory convulsive status epilepticus

Recommendations specific for children and young people

Administer intravenous midazolamAt the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/or population (see Licensing indications for details). Informed consent should be obtained and documented in line with normal standards in emergency care. or thiopental sodium to treat children and young people with refractory convulsive status epilepticus. Adequate monitoring, including blood levels of anti-epileptic drugs (AEDs), and critical life systems support are required. See also the suggested protocols in appendix F of the epilepsy NICE guideline.

Recommendations specific for adults

Administer intravenous midazolam, propofol or thiopental sodium to treat adults with refractory convulsive status epilepticus. Adequate monitoring, including blood levels of AEDs, and critical life systems support are required. See also the suggested protocols in appendix F of the epilepsy NICE guideline.

Differences in recommendations for conducting a review

Recommendations specific for children and young people

Children and young people should have a regular structured review with a specialist.
For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child or young person's epilepsy and their wishes and those of the family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the specialist, but is likely to be between 3 and 12 months.

Recommendations specific for adults

Adults should have a regular structured review with their GP, but depending on the person's wishes, circumstances and epilepsy, the review may be carried out by the specialist.
For adults, the maximum interval between reviews should be 1 year but the frequency of review will be determined by the person's epilepsy and their wishes.
Adults should have regular reviews. In addition, access to either secondary or tertiary care should be available to ensure appropriate diagnosis, investigation and treatment if the person or clinician view the epilepsy as inadequately controlled.
Adults with well-controlled epilepsy may have specific medical or lifestyle issues (for example, pregnancy or drug cessation) that may need the advice of a specialist.

Glossary

Seizures characterised by behavioural arrest associated with generalised spike wave activity on EEG.
The extent to which the person's behaviour matches the prescriber's recommendations. Adherence emphasises the need for agreement and that the patient is free to decide whether or not to adhere to the doctor's recommendation.
Where a medication is added to a first-line anti-epileptic drug (AED) for combination therapy.
The cause or origin of a disease or disorder as determined by medical diagnosis.
Aged 18 years and older.
(AED) Medication taken daily to prevent the recurrence of epileptic seizures.
Generalised seizures characterised by sudden onset of loss of muscle tone.
An episode in the course of an illness.
The initial set of measurements at the beginning of a study (after run-in period where applicable), with which subsequent results are compared.
(BECTS) An epilepsy syndrome of childhood (5–14 years) characterised by focal motor and/or secondarily generalised seizures, the majority from sleep, in an otherwise normal individual, with centrotemporal spikes seen on EEG.
Someone other than a healthcare professional who is involved in caring for a person with a medical condition.
An epilepsy syndrome with an age of onset of 4–9 years, characterised by frequent absence seizures associated with 3 Hz spike wave activity on EEG.
Aged 28 days to 11 years.
Aged 28 days to 11 years.
The description of the history and presentation of the clinical condition to the assessing medical team.
A healthcare professional providing direct patient care (for example, doctor, nurse or physiotherapist).
Co-existence of more than one disease or an additional disease (other than that being studied or treated) in a person.
This is a recent term, the meaning of which has changed. It was initially applied to the consultation process in which doctor and patient agree therapeutic decisions that incorporate their respective views, but now includes supporting patients in medicine-taking as well as communication when prescribing. Concordance reflects social values but does not address medicine-taking and may not lead to improved adherence.
(CSWS) An epilepsy syndrome with childhood onset, characterised by a plateau and regression of cognitive abilities associated with dramatic increase in spike wave activity in slow wave sleep (> 85% of slow sleep). There may be few seizures at presentation.
When a convulsive seizure continues for a prolonged period (longer than 5 minutes), or when convulsive seizures occur one after the other with no recovery between. Convulsive status epilepticus is an emergency and requires immediate medical attention.
The prescribed amount of a drug to be taken, including the size and timing of the doses.
Previously known as severe myoclonic epilepsy of infancy. An epilepsy syndrome with onset in infancy, characterised by initial prolonged, typically lateralised, febrile seizures, subsequent development of multiple seizure types including myoclonic, absence, focal and generalised tonic–clonic seizures, with developmental plateau or regression.
(ECG) A test that records the heart's electrical activity.
(EEG) An investigation that involves recording the electrical activity of the brain. Electrodes are attached to standardised points on the person's head with collodion. Recordings are usually taken across two points.
A transient occurrence of signs and/or symptoms, the result of a primary change to the electrical activity (abnormally excessive or synchronous) in the brain.
A distinctive disorder identifiable on the basis of a typical age of onset, seizure types, specific EEG characteristics, and often other features. Identification of epilepsy syndrome has implications for treatment, management and prognosis.
Seizures that originate within networks limited to one hemisphere, discretely localised or more widely distributed. Replaces the terms partial seizure and localisation-related seizure.
Seizures that originate in, and rapidly engage, bilaterally distributed networks. Such bilateral networks can include cortical and subcortical structures but do not necessarily include the entire cortex.
A seizure of sudden onset involving generalised stiffening and subsequent rhythmic jerking of the limbs, the result of rapid widespread engagement of bilateral cortical and subcortical networks in the brain.
With reference to epilepsy – the epilepsy is, as best as understood, the direct result of a known or presumed genetic defect(s) in which seizures are the core symptom of the disorder.
Description or history of ictal events (seizures).
A syndrome that is only epilepsy, with no underlying structural brain lesion or other neurological signs or symptoms. These are presumed to be genetic in aetiology and are usually age dependent.
(IGE) A well-defined group of disorders characterised by typical absences, myoclonic and generalised tonic–clonic seizures, alone or in varying combinations in otherwise normal individuals. The EEG is also characteristic, demonstrating a distinct pattern of generalised polyspike wave discharges and/or generalised spike wave. Presumed to have a genetic aetiology. The new classification of the International League Against Epilepsy (ILAE, 2010) suggests the terminology should change to genetic generalised epilepsy (GGE).
A specific seizure type presenting in the first year of life, most commonly between 3 and 9 months. Spasms are brief axial movements lasting 0.2–2 seconds, most commonly flexor in nature, involving flexion of the trunk with extension of the upper and lower limbs. They are occasionally referred to as 'salaam seizures'.
Healthcare action intended to benefit the patient, for example, drug treatment, surgical procedure or psychological therapy.
An epilepsy syndrome with an age of onset of 9–13 years characterised by absence seizures, associated with 3–4 Hz spike wave on EEG. Generalised tonic–clonic seizures may occur.
(JME) An epilepsy syndrome with an age of onset of 5–20+ years (peak 10–16 years) characterised by myoclonic seizures that most commonly occur soon after waking. Absence and generalised tonic–clonic seizures may occur in between 50 and 80% of people with JME. EEG demonstrates 3–6 Hz generalised polyspike and wave activity, with photosensitivity in more than 30% of people.
A specific diet that is high in fat but low in carbohydrates and protein.
(LKS) A very rare epilepsy syndrome with an age of onset of 3–6 years characterised by loss of language (after a period of normal language development) associated with an epilepsy of centrotemporal origin, more specifically bitemporal spikes on EEG with enhancement in sleep or continuous spike and wave during slow sleep.
Epilepsy with an age of onset in mid-childhood to adolescence with frequent brief seizures characterised by initial visual hallucinations, ictal blindness, vomiting and post-ictal headache. EEG typically shows interictal occipital spikes attenuated by eye opening.
An epilepsy syndrome with an age of onset of 3–10 years characterised by multiple seizure types (including atonic, tonic, tonic–clonic and atypical absence seizures), cognitive impairment and specific EEG features of diffuse slow spike and wave (< 2 Hz) as well as paroxysmal fast activity (10 Hz or more) in sleep.
Use of a single drug in treatment.
(MAE) Also known as Doose syndrome. An epilepsy syndrome with an age of onset of 18–60 months, characterised by different seizure types with myoclonic and myoclonic-astatic seizures seen in all, causing children to fall. The EEG shows generalised spike/polyspike and wave activity at 2–6 Hz.
Sudden brief (<100 ms) and almost shock-like involuntary single or multiple jerks due to abnormal excessive or synchronous neuronal activity and associated with polyspikes on EEG.
A deficiency or impairment of the nervous system.
A change in mental status or behaviour from baseline, associated with continuous seizure activity on EEG, which is also seen to be a change from baseline.
(NEAD) A disorder characterised by episodes of change in behaviour or movement, not caused by a primary change in electrical activity of the brain. Movements are varied, and the attacks can be difficult to differentiate from epileptic seizures.
Aged 65 years or older.
Epilepsy syndrome presenting in early childhood (mean 4–7 years) with rare seizures that are prolonged. Characterised by autonomic features including vomiting, pallor and sweating followed by tonic eye deviation, impairment of consciousness with possible evolution into secondary generalisation. Prognosis is excellent and treatment often unnecessary.
Pharmacokinetics is a term used to describe the way in which a drug is processed by the body, influencing absorption, metabolism, distribution and excretion.
Multiple different drugs used in a patient's treatment, which could include anti-epileptic drugs (AEDs).
Two or more medications used in combination therapy. The pathway specifically refers to anti-epileptic drugs (AEDs).
A probable course or outcome of a disease. Prognostic factors are patient or disease characteristics that influence the course of a disease. Good prognosis is associated with a low rate of undesirable outcomes; poor prognosis is associated with a high rate of undesirable outcomes.
A combination of a person's physical, mental and social wellbeing; not just the absence of disease.
For children and young people: a paediatrician with training and expertise in epilepsy. For adults: a medical practitioner with training and expertise in epilepsy.
(SUDEP) Sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death.
A brief lapse in consciousness caused by transient reduction in blood flow to the brain. May be caused by many different factors, including emotional stress, vagal stimulation, vascular pooling in the legs, diaphoresis, or sudden change in environmental temperature or body position.
An adult neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.
A paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.
Specialist care delivery unit, to which people may be referred from secondary care.
Tonic seizures are epileptic seizures characterised by abrupt generalised muscle stiffening possibly causing a fall. The seizure usually lasts less than a minute and recovery is rapid.
Tonic–clonic seizures are epileptic seizures characterised by initial generalised muscle stiffening, followed by rhythmical jerking of the limbs, usually lasting a few minutes. The person may bite their tongue and may be incontinent. They may feel confused or sleepy afterwards, and take a while to recover fully.
An epileptic seizure characterised by initial generalised muscle stiffening, followed by rhythmical jerking of the limbs, usually lasting a few minutes. The person may bite their tongue and may be incontinent. They may feel confused or sleepy afterwards, and take a while to recover fully.
Aged 12 to 17 years.
Aged 12 to 17 years.

Paths in this pathway

Pathway created: January 2012 Last updated: February 2014

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