CG020adultsquickrefguide

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National Institute forClinical Excellence

MidCity Place

71 High HolbornLondon

WC1V 6NA

www.nice.org.uk

ImplementationLocal health communities should review theirexisting practice for epilepsy. The review shouldconsider the resources required to implement therecommendations set out in the guideline, thepeople and processes involved, and the timelineover which full implementation is envisaged. It is inthe interests of adults with epilepsy that theimplementation timeline is as rapid as possible.

Relevant local clinical guidelines, care pathways andprotocols should be reviewed in the light of theguidance and revised accordingly.

The guideline should be used in conjunction withthe National Service Frameworks for long-termneurological conditions.

Further informationDistribution

This quick reference guide to the Institutesguideline on the diagnosis and management of the

epilepsies contains the key priorities forimplementation, summaries of the guidance, andnotes on implementation. The distribution list forthis quick reference guide is available fromwww.nice.org.uk/CG020adultsdistributionlist

NICE guideline

The NICE guideline, The epilepsies: the diagnosisand management of the epilepsies in adults andchildren in primary and secondary care, is availablefrom the NICE website(www.nice.org.uk/CG020NICEguideline).

The NICE guideline contains the following sections:Key priorities for implementation; 1 Guidance; 2

Notes on the scope of the guidance; 3Implementation in the NHS; 4 Researchrecommendations; 5 Full guideline; 6 Related NICEguidance; 7 Review date.

It also gives details of the grading scheme forthe evidence and recommendations, the GuidelineDevelopment Group and the Guideline ReviewPanel, and technical detail on the criteria for audit.

A quick reference guide for the diagnosis andmanagement of the epilepsies in children andyoung people is available from the website(www.nice.org.uk/CG020childrenquickrefguide) orfrom the NHS Response Line (see below forordering information).

Full guideline

The full guideline includes the evidence on whichthe recommendations are based, in addition to theinformation in the NICE guideline. It is published bythe National Collaborating Centre for Primary Care.It is available from www.rcgp.org.uk, the NICEwebsite (www.nice.org.uk/CG020) and the websiteof the National Electronic Library for Health(www.nelh.nhs.uk).

Information for the public

NICE has produced a version of this guidance forpeople with epilepsy. The information is available,in English and Welsh, from the NICE website(www.nice.org.uk/CG020). Printed versions are alsoavailable see below for ordering information.

Related guidance

National Institute for Clinical Excellence (2004)Newer drugs for epilepsy in adults. NICE TechnologyAppraisal Guidance no. 76. London: NationalInstitute for Clinical Excellence. Available from:www.nice.org.uk/TA076

Review date

The process of reviewing the evidence is expectedto begin 4 years after the date of issue of thisguideline. Reviewing may begin earlier than 4 years

if significant evidence that affects the guidelinerecommendations is identified sooner. The updatedguideline will be available within 2 years of thestart of the review process.

N0739 1P 80k Oct 04 (OAK)

Ordering information

Copies of this quick reference guide can be obtained from the NICE website at

www.nice.org.uk/CG020adultsquickrefguide) or from the NHS Response Line by telephoning

0870 1555 455 and quoting reference number N0739. Information for the public is also

available from the NICE website or from the NHS Response Line (quote reference number

N0741 for a version in English and N0742 for a version in English and Welsh).

The quick reference guide for the diagnosis and management of the epilepsies in children is

available from the NICE website (www.nice.org.uk/CG020childrenquickrefguide) or from the

NHS Response Line (quote reference number N0740).


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Issue date: October 2004

Quick reference guide

The epilepsies: diagnosis andmanagement of the epilepsiesin adults in primary andsecondary care

Clinical Guideline 20October 2004

Developed by the National Collaborating Centre for Primary Care

ADU

LTS

ADULTS AD

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LTS

A

DU

LTSADULTSA

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1 NICE Guideline: quick reference guide epilepsies in adults

This guidance is written in the following context:This guidance represents the view of the Institute, which was arrived at after careful consideration of the evidence

available. Health professionals are expected to take it fully into account when exercising their clinical judgement. The

guidance does not, however, override the individual responsibility of health professionals to make decisions appropriate

to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.

National Institute forClinical Excellence

MidCity Place

71 High Holborn

London

WC1V 6NA

Website: www.nice.org.uk

National Institute for Clinical Excellence, October 2004. All rights reserved. This material may be freely reproduced for educational and not-

for-profit purposes within the NHS. No reproduction by or for commercial organisations is allowed without the express written permission of

the National Institute for Clinical Excellence.

Contents

Information about this guide 2

Key priorities for implementation 2

Grading of the recommendations 2

Outline care algorithm 3

Diagnosis, investigation and classification 4

Treatment and care 6

Referral to tertiary care 14

Regular structured review 14

Prolonged or repeated seizures 15

Information for adults with epilepsy and their family and/or carers 16

Women with epilepsy 17

Special groups 18

Implementation Back cover

Further information Back cover

Ordering information Back cover

Published by the National Institute for Clinical Excellence

October 2004

ISBN: 1-84257-806-5

Printed by Oaktree Press Ltd, London

Contents

Abbreviations used in this guide

AED anti-epileptic drug

CT computed tomography

EEG electroencephalogram

ESN epilepsy specialist nurse

FBC full blood count

GDG Guideline Development Group

MRI magnetic resonance imaging

SUDEP sudden unexpected death in

epilepsy


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2NICE Guideline: quick reference guide epilepsies in adults

Keyprioritiesforimplem

entation

Key priorities for implementationThe following recommendations have been identified as key priorities for implementation.

Diagnosis

All adults with a recent-onset suspected seizure should be seen urgentlya by a specialistb. This is to ensureprecise and early diagnosis and initiation of therapy as appropriate to their needs.

The seizure type(s) and epilepsy syndrome, aetiology and co-morbidity should be determined.

Management

Healthcare professionals should adopt a consulting style that enables the adult with epilepsy, and theirfamily and/or carers as appropriate, to participate as partners in all decisions about their healthcare, andtake fully into account their race, culture and any specific needs.

All adults with epilepsy should have a comprehensive care plan that is agreed between the individuals,their family and/or carers as appropriate, and primary and secondary care providers.

The AED (anti-epileptic drug) treatment strategy should be individualised according to the seizure type,epilepsy syndrome, co-medication and co-morbidity, the individuals lifestyle, and the preferences of theindividual, and their family and/or carers as appropriate.

Review and referral

All individuals with epilepsy should have a regular structured review. In adults, this review should becarried out at least yearly by either a generalist or specialist, depending on how well the epilepsy iscontrolled and/or the presence of specific lifestyle issues.

At the review, individuals should have access to: written and visual information; counselling services;information about voluntary organisations; epilepsy specialist nurses; timely and appropriateinvestigations; referral to tertiary services, including surgery as appropriate.

If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, individualsshould be referred to tertiary services soonc for further assessment.

Special considerations for women of childbearing potential

Women with epilepsy and their partners, as appropriate, must be given accurate information andcounselling about contraception, conception, pregnancy, caring for children, breastfeeding andmenopause.

a The Guideline Development Group considered that urgently meant within 2 weeks.b For adults, a specialist is defined throughout as a medical practitioner with training and expertise in the epilepsies.c The Guideline Development Group considered that soon meant being seen within 4 weeks.

Information about this guide

This quick reference guide summarises the recommendations in the NICE guideline for the care of adults(people aged 18 or oldera) with epilepsy. The NICE guideline (www.nice.org.uk/CG020NICEguideline) alsocontains recommendations for the care of children and young people with epilepsy, which are summarised in aseparate quick reference guide (see www.nice.org.uk/CG020childrenquickrefguide).

a It is recognised that there is a variable age range (1519 years) at which care is transferred between child and adult

health services by local healthcare trusts and primary care organisations.

Grading of the recommendations

The recommendations on pages 4 to 18 are evidence-based. The grading system used is shown below. Furtherinformation on the grading of the recommendations and the evidence used to develop the guideline ispresented in the full guideline (see the back cover for details).

A Directly based on category I evidence (meta-analysis of randomised controlled trials [RCTs] or at least oneRCT)

B Directly based on category II evidence (at least one controlled study without randomisation or at leastone other quasi-experimental study) or extrapolated from category I evidence

C Directly based on category III evidence (non-experimental descriptive studies) or extrapolated fromcategory I or II evidence

D Directly based on category IV evidence (expert committee reports or opinions and/or clinical experienceof respected authorities) or extrapolated from category I, II or III evidence

N Recommendation taken from NICE guideline or technology appraisal guidance

GPP Good practice point based on the clinical experience of the Guideline Development Group

See the NICE guideline for further information (www.nice.org.uk/CG020NICEguideline).


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Outlinecarea

lgorithm Outline care algorithm

Referral topsychological or

psychiatric servicesEpilepsy

Diagnosis by specialist Cwith investigations as necessary: see pages 45

Further investigation, includingassessment of other physical

causes (e.g. cardiac)GPP(see page 5) or

A&E(protocols in place for assessment)

Initial screening by physicianPrimary care

Diagnostic doubt

Referral to epilepsyspecialist or other

specialist(e.g. cardiologist)

Non-epileptic attackdisorder

Treatment with AEDs only inexceptional circumstances:

see page 6

Suspected epilepticseizure

Referral to specialist as soon as possible N(The GDG recommended within 2 weeks)

Information obtained about the eventGPPPhysical examination C

Suspected seizure

Appropriateinformationprov

idedatallstages:

see

page

16

Referral to tertiary care:GPPsee page 14

Uncertain

Regular structured review for all: see page 14

Referral to tertiarycare:

see page 14

Investigation andclassification by seizure

type and epilepsysyndrome by specialist:

see pages 45

Prolonged or repeatedseizures

Status epilepticusSee page 15

Treatment:see pages 613

Women with epilepsy:see page 17

Special groups People with learning disabilities Black and ethnic minority groups Older people

See page 18

As necessaryKEY:


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Diagnosis,investigationandclassificationDiagnosis, investigation and classification

See Appendix F of the NICE guideline (www.nice.org.uk/CG020) for an algorithm of differential diagnosis.

Investigations

EEG

Use EEG: to support a diagnosis of epilepsy in adults in whom the clinical history suggests it C to help determine seizure type and epilepsy syndromeC to assess the risk of seizure recurrence after a first unprovoked seizure.B

Do not use EEG: to exclude a diagnosis of epilepsyC in the case of probable syncope (risk of false-positive result)C in isolation to diagnose epilepsy.C

Use standard EEG: with photic stimulation and hyperventilation, with informed consent.GPP

If diagnosis or classification is still unclear, use: long-term video or ambulatory EEGC sleep EEGC repeated standard EEG (do not use in preference to sleep or sleep-deprived EEG).C

Neuroimaging Use neuroimaging (MRI/CT) to identify structural abnormalities that cause certain epilepsies.C Do not routinely request neuroimaging when a diagnosis of idiopathic generalised epilepsy has been

made.C

MRI

MRI is the imaging investigation of choice for people with epilepsy. The use of MRI is particularly important for people:

who have developed epilepsy as adults who have any suggestion of a focal onset from history, examination or EEG in whom seizures continue in spite of first-line medication.C

Diagnosis should be made by a specialist in the epilepsies C

Detailed history of the attack:

from the person who had the attack + symptomsB from eye-witness(es) to the attack

Prospective recording (video and written) can be usefulGPP

Do not base the diagnosis on presence or absence of single features B

Supporting investigations (EEG, neuroimaging) see below

Give the person with epilepsy and their family and/or carers as appropriate an opportunity to discuss thediagnosis with an appropriate healthcare professionalGPP

EEG should be performed soona after it is requested.GPP

a The GDG considered that soon meant within 4 weeks.

MRI should be performed soona after it is requested.GPP

a The GDG considered that soon meant within 4 weeks.


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CT

CT is an alternative to MRI: C if MRI is contraindicated or unavailableC in an acute situation, to determine whether a seizure has been caused by an acute neurological lesion or

illness.GPP

Other tests and assessments Consider blood tests (e.g. plasma electrolytes, glucose, calcium) to identify potential causes or significant co-

morbidity.GPP Perform a 12-lead ECG.GPP

Refer to a cardiologist in cases of diagnostic uncertainty.GPP

Refer for neuropsychological assessment when: MRI has identified abnormalities in areas associated with cognitive function the person with epilepsy is having educational or occupational difficulties the person with epilepsy complains of memory or other cognitive deficits and/or cognitive decline.D

Classification

Determine: seizure type(s), epilepsy syndrome, aetiology and co-morbidity.C Classify epileptic seizures and epilepsy syndromes: use a multi-axial diagnostic scheme (axes description of

seizure; seizure type; syndrome and aetiology).D

Provide the person with epilepsy with appropriate information about investigations, diagnosis andprognosis (see page 15)

Refer to tertiary care as necessary (see page 14)

Diagnosis,investigationandclassificationcontinued


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Treatment

andcareTreatment and care

Empowering people to manage their condition

Adults with epilepsy and their families and/or carers should be empowered to manage their condition aswell as possible.GPP

Adults should receive appropriate information and education about all aspects of epilepsy (see page 16). Thismay be best achieved and maintained through structured self-management plans.A

If individuals wish to manage their condition more effectively, highlight the Expert Patients Programme(www.expertpatients.nhs.uk).GPP

Overall care

Provide an accessible point of contact with the specialist services.GPP Enable adults with epilepsy, and their family and/or carers as appropriate, to participate as partners in all

decisions about their healthcare.D Take fully into account the race, culture and any specific needs (including the need for appropriate

interpreters) of the person with epilepsy and of their family and/or carers as appropriate.D Establish a comprehensive care plan that:

is agreed between the individual, family and/or carers (where appropriate) and primary and secondary careproviders

includes medical and lifestyle issues.GPP Epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy. Their

key roles are to support both epilepsy specialists and generalists, ensure access to community and multi-agency services, and provide information, training and support to the individual, families and carers.D

Anti-epileptic drugs (AEDs)

Starting treatment

The decision to start AED treatment should be made after full discussion of the risks and benefits, takingaccount of the persons epilepsy syndrome, prognosis and lifestyle.GPP

The decision should be made between the person with epilepsy, their family and/or carers (as appropriate)and an epilepsy specialist. After a full discussion of the risks and benefits, some adults with epilepsy may choose not to take AED

therapy.GPP AED therapy should only be started once the diagnosis of epilepsy is confirmed, except in exceptional

circumstances that require discussion and agreement between the prescriber, the specialist and the individual

and their family and/or carers as appropriate.GPP Treatment with AED therapy is generally recommended after a second epileptic seizure. A Consider AED treatment after a first unprovoked seizure if:

the individual has a neurological deficit the EEG shows unequivocal epileptic activity the individual and/or their family and/or carers consider the risk of having a further seizure unacceptable brain imaging shows a structural abnormality.B

Specialist supervision of AED treatment

An epilepsy specialist should:

recommend initiation of appropriate treatment

plan continuation of treatment manage, or provide guidance for, withdrawalGPP


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atmentandcarecontinued

Choice of AED

Choice of drug

Monotherapy and combination therapy

Use monotherapy whenever possible.N If the first treatment is unsuccessful, try monotherapy with another drug.GPP Consider combination therapy if seizures continue after attempts with monotherapy.N If an AED has failed because of adverse effects or continued seizures, start the second drug (alternative first-

line or second-line) and build up to an adequate or maximum-tolerated dose and only then taper off thefirst drug slowly.GPP

If the second drug is unhelpful, taper either the first or second drug (depending on relative efficacy, sideeffects and tolerability) before starting another drug.GPP

If trials of combination therapy do not bring about worthwhile benefits, revert to the regimen(monotherapy or combination therapy) that has provided the best balance between tolerability andreducing seizure frequency.N

Use of the newer AEDs

Newer AEDsa are recommended: for adults who have not benefited from treatment with the older AEDs (e.g. carbamazepine or sodium

valproate) when the older AEDs are unsuitable because:

of contraindications of potential interactions with other drugs (notably oral contraceptives) they have been poorly tolerated by the person with epilepsy

the person is a woman of childbearing potential.N

Continuing treatment

Continuing AED therapy should be planned by a specialist; if management is straightforward, continuingAED therapy can be prescribed in primary care if local circumstances and/or licensing allow.GPP

Continuing prescribing should: be part of the individuals agreed treatment plan (include details of how specific drug choices were made,

drug dosage, possible side effects, and action to take if seizures persist)GPP take account of the needs of the person with epilepsy and their family and/or carers (as

appropriate).GPP The formulation or brand of AED should not be changed (variations in bioavailability or different

pharmacokinetic profiles may increase the potential for reduced effect or excessive side effects).D Carry out regular blood test monitoring only if clinically indicated.C

Indications for monitoring AED blood levels:

detection of non-adherence to the prescribed treatment suspected toxicity adjustment of phenytoin dose management of pharmacokinetic interactions specific clinical conditions (e.g. status epilepticus, organ failure or pregnancyb).D

Carry out other blood tests as necessary, for example: clotting studies before surgery for adults taking valproate full blood count, electrolytes, liver enzymes, vitamin D levels, and other tests of bone metabolism every

25 years for adults taking enzyme-inducing drugs.GPP Asymptomatic minor abnormalities in blood test results are not necessarily an indication for changes in

medication.GPP

Factors to consider when tailoring treatment strategy to the individual

Seizure type

Epilepsy syndrome Co-medication

Co-morbidity

Lifestyle Preferences of the individual (and their family and/or carers, as appropriate)

See pages 812 for further details A

a Gabapentin, lamotrigine, levetiracetam, oxcarbazepine, tiagabine, topiramate and vigabatrin, within their licensed

indications.b Routine monitoring during pregnancy is not recommended; monitoring for dose adjustment may be needed if seizures

increase or are likely to increase. D


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ontinuedWithdrawing treatment

Discuss continuing or withdrawing AED treatment with adults who have been seizure free for at least2 years. (Appendix H of the full guideline has tables for the prognosis of remission of seizures seewww.nice.org.uk/CG020fullguideline)A

The decision to withdraw medication should be taken by the individual, their family and/or carers (asappropriate), and the specialist after a full discussion of the risks and benefits of withdrawal. The discussion should include the persons risk of seizure recurrence on and off treatment and take

account of his/her epilepsy syndrome, prognosis and lifestyle. A Withdrawal of AEDs must be managed by, or be under the guidance of, the specialist.GPP

Withdrawing an AED

Withdraw gradually (over 23 months or longer); be aware of possible seizure recurrence.D Longer for benzodiazepines (6 months or longer); be aware of drug-related withdrawal symptoms and/or

seizure recurrence.GPP Withdraw one drug at a time. D Agree with the person with epilepsy and their family and/or carers a failsafe plan of action if seizures recur

(last dose reduction reversed, medical help sought).GPP

Other interventions

Psychological interventions

Consider use as adjunctive therapy not as an alternative to pharmacological treatment where either theindividual or the specialist considers seizure control to be inadequate with optimal AED therapy.A

Vagus nerve stimulation (VNS)

Use VNS as an adjunctive therapy to reduce the frequency of seizures in adults who are refractory to AEDtherapy but who are not suitable for resective surgery including adults whose epileptic disorder isdominated by partial seizures (with or without secondary generalisation) or generalised seizures.A

Complex or refractory epilepsy refer to tertiary care (see page 14)

Regular structured review (see page 14)

Provide adults with epilepsy with appropriate information about care and treatment (see page 16)

The tables that follow provide a summary reference guide to pharmacological treatment. They wereprepared from data available in July 2004. Prescribers should refer to the British National FormularyandSummary of Product Characteristics for full and up-to-date details of licensing (also see Table 3).

The tables should be used alongside the technology appraisal guidance published on the use of newer AEDsin adults with epilepsy (available from the NICE website at www.nice.org.uk/TA076).

All drugs are listed in alphabetical order.


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ontinued Table 1 Drug options by seizure type

Seizure type First-line drugs Second-line drugsOther drugs thatmay be considered

Drugs to be avoided(may worsen seizures)

Generalisedtonicclonic

Carbamazepinea

Lamotrigineb

Sodium valproateTopiramatea,b

ClobazamLevetiracetamOxcarbazepinea

AcetazolamideClonazepamPhenobarbitala

Phenytoina

Primidonea,c

TiagabineVigabatrin

Absence EthosuximideLamotrigineb

Sodium valproate

ClobazamClonazepamTopiramatea

Carbamazepinea

GabapentinOxcarbazepinea

TiagabineVigabatrin

Myoclonic Sodium valproate ClobazamClonazepamLamotrigineLevetiracetam

PiracetamTopiramatea

Carbamazepinea

GabapentinOxcarbazepinea

Tiagabine

Vigabatrin

Tonic Lamotrigineb

Sodium valproateClobazamClonazepamLevetiracetamTopiramatea

AcetazolamidePhenobarbitala

Phenytoina

Primidonea,c

Carbamazepinea

Oxcarbazepinea

Atonic Lamotrigineb


AcetazolamidePhenobarbitala

Primidonea,c

Carbamazepinea

Oxcarbazepinea

Phenytoina

Focal with/without

secondarygeneralisation

Carbamazepinea

Lamotrigine

b

Oxcarbazepinea,b


Clobazam

GabapentinLevetiracetamPhenytoina

Tiagabine

Acetazolamide

ClonazepamPhenobarbitala

Primidonea,c

a Hepatic enzyme-inducing AED.

b Should be used as a first choice under circumstances outlined in the NICE technology appraisal of newer AEDs foradults see page 7.

c Should rarely be initiated if a barbiturate is required, phenobarbital is preferred.

Table 3 summarises licensing status in July 2004. For current details on licensing, see the Summary of ProductCharacteristics for each drug and/or the British National Formulary.

Table 2 Drug options by epilepsy syndrome

Epilepsy syndrome First-line drugs Second-line drugs Other drugsDrugs to be avoided(may worsen seizures)

Childhood absenceepilepsy

EthosuximideLamotrigineb

Sodium valproate

LevetiracetamTopiramatea

Carbamazepinea

Oxcarbazepinea

PhenytoinTiagabineVigabatrin

Juvenile absenceepilepsy

Lamotrigineb

Sodium valproateLevetiracetamTopiramatea

Carbamazepinea

Oxcarbazepinea

PhenytoinaTiagabineVigabatrin


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ontinuedTable 2 Drug options by epilepsy syndrome continued

Epilepsy syndrome First-line drugs Second-line drugs Other drugsDrugs to be avoided(may worsen seizures)

Juvenile myoclonicepilepsy

Lamotrigineb


Acetazolamide Carbamazepinea

Oxcarbazepinea

Phenytoina

TiagabineVigabatrin

Generalisedtonicclonicseizures only

Carbamazepinea

Lamotrigineb


Levetiracetam AcetazolamideClobazamClonazepamOxcarbazepinea

Phenobarbitala

Phenytoina

Primidonea,c

TiagabineVigabatrin

Focal epilepsies:cryptogenic,symptomatic

Carbamazepinea

Lamotrigineb

Oxcarbazepinea,b

Sodium valproate

Topiramate

a,b

ClobazamGabapentinLevetiracetamPhenytoina

Tiagabine

AcetazolamideClonazepamPhenobarbitala

Primidonea,c

Infantile spasms Steroidsd

VigabatrinbClobazamClonazepamSodium valproateTopiramatea

Nitrazepam Carbamazepinea

Oxcarbazepinea

Benign epilepsywithcentrotemporalspikes

Carbamazepinea

Lamotrigineb

Oxcarbazepinea,b

Sodium valproate


Sulthiamee

Benign epilepsywith occipitalparoxysms

Carbamazepinea

Lamotrigineb

Oxcarbazepinea,b

Sodium valproate


Severe myoclonicepilepsy of infancy

ClobazamClonazepamSodium valproateTopiramatea,b

LevetiracetamStiripentole

Phenobarbitala

Carbamazepinea

LamotrigineOxcarbazepinea

Vigabatrin

Continuous spikewave of slow sleep

ClobazamClonazepamEthosuximideLamotrigineb

Sodium valproateSteroidsd


Carbamazepinea

Oxcarbazepinea

Vigabatrin

LennoxGastautsyndrome

Lamotrigineb


ClobazamClonazepamEthosuximideLevetiracetam

Felbamatee Carbamazepinea

Oxcarbazepinea

LandauKleffnersyndrome

Lamotrigineb

Sodium valproateSteroidsd


Sulthiamee Carbamazepinea

Oxcarbazepinea

Myoclonic astaticepilepsy

ClobazamClonazepamSodium valproateTopiramatea,b

LamotrigineLevetiracetam

Carbamazepinea

Oxcarbazepinea

a Hepatic enzyme-inducing AED.

b Should be used as a first choice under circumstances outlined in the NICE technology appraisal of newer AEDs foradults see page 7.

c Should rarely be initiated if a barbiturate is required, phenobarbital is preferred.

d Steroids: prednisolone or ACTH (adrenocorticotrophic hormone).

e Not licensed in the UK, but available by importation.Table 3 summarises licensing status in July 2004. For current details on licensing, see the Summary of ProductCharacteristics for each drug and/or the British National Formulary.


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ontinued Table 3 Licensing of AEDsa

Drug Details of licensing

Acetazolamide Indicated for use in conjunction with other AEDs including for tonicclonic and partial seizures.

Carbamazepineb Indicated for use in generalised tonicclonic and partial seizures.

Clobazam Indicated for adjunctive therapy in epilepsy.

Clonazepam Indicated for all forms of epilepsy and seizures. Especially absence seizures including atypical absence;primary or secondarily generalised tonicclonic, tonic or clonic seizures; partial seizures with elementary orcomplex symptomatology; various forms of myoclonic seizures, myoclonus and associated abnormalmovements.

Ethosuximide Indicated primarily in absence seizures. May be used in combination with other AEDs when generalisedtonicclonic seizures and other forms of epilepsy co-exist with absence seizures.

Felbamate No details.

Gabapentin Indicated as add-on therapy for partial seizures and partial seizures with secondary generalisation inpatients who have not achieved satisfactory control with or who are intolerant of standardanticonvulsants used alone or in combination.

Lamotrigine Indicated for simple partial seizures, complex partial seizures, secondarily generalised tonicclonic seizures,and primary generalised tonicclonic seizures.Also indicated for the treatment of seizures associated with LennoxGastaut syndrome.

Levetiracetam Indicated as adjunctive therapy in the treatment of partial-onset seizures with or without secondarygeneralisation in patients with epilepsy.

Oxcarbazepineb Indicated for the treatment of partial seizures with or without secondarily generalised tonicclonicseizures.

Indicated for use as monotherapy or adjunctive therapy in adults and in children of 6 years of age andabove.

Phenobarbitalb Indicated for all forms of epilepsy, except absence seizures.

Phenytoinb Indicated for tonicclonic seizures, partial seizures, or a combination.

Piracetam Indicated for patients with myoclonus of cortical origin, irrespective of aetiology, and should be used incombination with other anti-myoclonic therapies.

Primidoneb Indicated for generalised tonicclonic seizures and psychomotor epilepsy. Also can be used in partial orJacksonian seizures, myoclonic jerks and akinetic attacks.

Sodiumvalproate

Indicated for generalised, partial or other epilepsy.

Sulthiame No details.

Tiagabine Indicated as add-on therapy for partial seizures with or without secondary generalisation where control isnot achieved by optimal doses of at least one other AED.

Topiramateb Indicated for partial seizures with or without secondarily generalised seizures, seizures associated withLennoxGastaut syndrome, and primary generalised tonicclonic seizures.

Vigabatrin Treatment in combination with other AEDs for patients with resistant partial epilepsy with or withoutsecondary generalisation; that is, where all other appropriate drug combinations have proved inadequateor have not been tolerated.Also for monotherapy in the treatment of infantile spasms.

a Information from the Summary of Product Characteristics for each drug and/or the British National Formulary. The British National ForJuly 2004. Please refer to the British National Formularyand Summary of Product Characteristics for current information on these drugs

b Hepatic enzyme-inducing AED.


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ontinued

Age below which use is unlicensed

Monotherapy Adjunctive treatment

Unlicensed No age limit specified

No age limit specified No age limit specified

Unlicensed < 3 years but can be used inchildren aged 6 months to3 years in exceptional cases



Unlicensed < 6 years

< 12 years < 2 years


< 6 years < 6 years







< 6 years < 2 years


ywas accessed for the purposes of this guideline in


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Treatmentandcarec

ontinued

Table 4 Side effects of drug treatment in adults that may be clinically significantGPP

The following selected list of side effects that may be clinically significant was developed from the Summary of ProductCharacteristics and the British National Formularyon behalf of the GDG by Professor JS Duncan and Professor JWASSander of University College London.

The list was developed to help the practising clinician; it should not be considered exhaustive. For full details of sideeffects, the prescriber should refer to the British National Formularyand the Summary of Product Characteristics for eachdrug.

Drug Significant side effects include:

Acetazolamide Some loss of appetite, depression, tingling feeling in the extremities, polyuria, thirst, headache,dizziness, fatigue, irritability, and occasional instances of drowsiness.

Carbamazepinea Allergic skin reactions, including urticaria, which may be severe. Accommodation disorders, for exampleblurred vision, diplopia, ataxia and nausea. Particularly at the start of treatment, or if the initial dose istoo high, certain types of adverse reaction occur very commonly or commonly.

Clobazam Drowsiness has been reported. Tolerance may develop, especially during prolonged use.

Clonazepam Somnolence and fatigue have been observed: such effects are usually transitory and disappearspontaneously as treatment continues or with dosage reduction. With certain forms of epilepsy, anincrease in the frequency of seizures during long-term treatment is possible.

Ethosuximide Mild side effects, which are usually transient, may occur initially. These include headache, nausea anddrowsiness. Other adverse reactions reported include weight loss and irritability.

Gabapentin The most common possible side effects are somnolence and dizziness. A common side effect is fatigue.Headache has also been reported.

Lamotrigine Skin rash, which generally appears within 8 weeks of starting treatment and resolves on withdrawal.Adverse experiences reported include drowsiness, diplopia, dizziness, headache, insomnia, tiredness,fever (associated with a rash as part of a hypersensitivity syndrome) and agitation, confusion andhallucinations.

Levetiracetam Most common reported undesirable effects include dizziness and somnolence. Other undesirableeffects include irritability, insomnia, ataxia, tremor, headache and nausea.

Oxcarbazepinea Very common undesirable effects include diplopia, headache and nausea. Common undesirable effectsinclude skin rash, ataxia and confusion.

Phenobarbitala Drowsiness, lethargy and mental depression.

Phenytoina Hypersensitivity reactions including skin rash. Common undesirable effects include drowsiness, ataxiaand slurred speech and these are usually dose related. Coarsening of facial features, gingivalhyperplasia, and hirsutism may occur rarely. Some haemopoetic complications have been reportedincluding some anaemias (these usually respond to folic acid). Motor twitchings, dyskinesias (rare),tremor (rare), and mental confusion have all been observed.

Piracetam Reported effects (incidence of between 1% and 3%) include weight increase, insomnia, somnolence,nervousness, depression and (incidence less than 1%) diarrhoea and rash.

Primidonea Most common side effects include drowsiness and listlessness but these generally occur only at thebeginning of treatment. Other effects have been reported but are usually transient. On occasions, anidiosyncratic reaction may occur which involves these symptoms in an acute and severe formnecessitating withdrawal.

Sodiumvalproate

Sedation and tremor have been reported occasionally. Transient hair loss, which may sometimes bedose related, has often been reported. Regrowth normally begins within 6 months. Increase in weight

may also occur. Severe liver damage has been very rarely reported. Encephalopathy and pancreatitismay occur rarely. Also, hyperammonaemia without change in liver function tests may occur frequentlyand is usually transient. Blood dyscrasias may occur frequently and the blood picture return to normalwhen the drug is discontinued. Sodium valproate has been associated with amenorrhoea and irregularperiods. Any menstrual problems should be reported to the GP and neurologist. Sodium valproate isassociated with a higher risk of fetal malformations if taken in pregnancy.

Tiagabine Dizziness, tiredness, nervousness (non-specific), tremor, concentration difficulties and depressed mood.

Topiramate Headache, somnolence, dizziness, paraesthesia and weight decrease. Increased risk of nephrolithiasis.Difficulty with memory and concentration/attention has been reported. Cases of eye reactions secondary acute angle closure glaucoma presenting as painful red eye or acute myopia have rarelybeen associated with topiramate occurring within 1 month of starting treatment.

Vigabatrin Somnolence is very common, whilst nausea, agitation, aggression, irritability and depression arecommon. Psychosis has been reported as uncommon. Visual field defects have been reported in one inthree people taking vigabatrin with onset usually after months to years of treatment. Any person who

has concerns about this should talk to their GP and neurologist. Visual field tests should be done every6 months in patients on vigabatrin.

a Hepatic-enzyme-inducing drugs


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ReferraltotertiarycareReferral to tertiary care

Indications for referral to a tertiary epilepsy service

Refer immediately

Behavioural or developmental regressionGPP Epilepsy syndrome cannot be identifiedGPP

Refer soona

Consider when one or more of the following are present:

AEDs do not control seizures within 2 yearsD two AEDs have been tried unsuccessfullyGPP there are, or there is a risk of, unacceptable side effects of medicationGPP there is a unilateral structural lesionGPP there is psychological and/or psychiatric co-morbidityGPP there is diagnostic doubt about seizure type and/or syndromeGPP

a The GDG considered that soon meant being seen within 4 weeksNote: psychiatric co-morbidity and/or negative baseline investigations should not be a contraindication for referral toa tertiary centreGPP

Regularstructuredrevie

wRegular structured review

Provide regular structured review: usually, by the GP or by the specialist, depending on the person with epilepsys circumstances, epilepsy or

preferencesD at least once a year; frequency will depend on persons epilepsy and preference.D

Refer to secondary or tertiary care if: epilepsy is inadequately controlled (in the view of the specialist or the person with epilepsy)D there are specific medical or lifestyle issues (for example, pregnancy or drug cessation).D

At the review

Consider treatment: effectiveness

tolerability side effects adherenceN

Discuss the treatment plan and potential lifestyle issuesGPP

Ensure access to: information (see page 16) counselling services epilepsy specialist nurses timely and appropriate investigations referral to tertiary care (including surgery) where appropriateD


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Prolongedorrepeated

seizures

Prolonged or repeated seizures in the community

Convulsive seizures lasting 5 minutes or longer

or Give urgent care and treatmentA

three or more seizures in an hour

Action

Secure the airwayGPP

Assess respiratory and cardiac functionGPP

Give rectal diazepam in most cases A

or

buccal midazolama an alternative to rectal diazepam

These drugs should be given by a trained healthcare professional, or by a trained family member or careraccording to the individual agreed protocol drawn up by the specialistGPP

Call emergency services if required by the situation or the response to treatment, and particularly if:

seizures develop into status epilepticus there is a high risk of recurrence this is the first episode there may be difficulties monitoring the persons conditionGPP

a Currently unlicensed for the treatment of prolonged or repeated seizures inform the individual and their familyand/or carers as appropriate.GPP

Status epilepticus

Convulsive status epilepticus

Generalised tonicclonic status epilepticus in hospital: manage immediately (local protocols should be inplace)GPP

See the suggested treatment guidelines in Appendix C of the full guideline (available from the NICEwebsite: www.nice.org.uk/CG020fullguidance)D

If the whole protocol or intensive care is required, consult tertiary careGPP

Formulate individual treatment pathway for adults who have recurrent convulsive status epilepticusGPP

Non-convulsive status epilepticus

Non-convulsive status epilepticus is uncommon and management is less urgent see suggested treatmentguidelines in Appendix C of the full guideline (available from the NICE website:www.nice.org.uk/CG020fullguidance)GPP

Prolonged or repeated seizures


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Inf

ormationforadultswithepilepsyan

dtheirfamilyand/orcarersInformation for adults with epilepsy and their family

and/or carers

Everyone providing care or treatment should be able to provide essential information.GPP Provide information in formats, languages and ways that are suited to the individuals requirements.

Consider developmental age, gender, culture and stage of life.GPP Provide information before the person makes important decisions.C Set aside adequate time in the consultation to provide information.GPP Use checklists to remind both individuals and healthcare professionals about information that should be

discussed during consultations.GPP Repeat the information at later consultations.GPP Ensure the person with epilepsy and/or their family or carers know how to contact a named member of the

healthcare team to get the information they need.GPP Refer the person with epilepsy and/or their family or carers to sources of high-quality information (using the

Internet, if appropriate: see, for example, the website of the Joint Epilepsy Council of the UK and Ireland,www.jointepilepsycouncil.org.uk).GPP

Discuss the possibility of having seizures, and provide information on epilepsy, before seizures occur forpeople at high risk of developing seizures (such as after severe brain injury), people with a learningdisability, or people who have a strong family history of epilepsyGPP

Information to provide

General information about epilepsy

What epilepsy is

Diagnosis

Reasons for tests and what the

results mean

Seizure type and syndrome

Prognosis

Sudden unexpected death in

epilepsy (SUDEP see below) Psychological issues

Managing risk Self care

Seizures

Type(s)

Triggers

Control

Treatment options

AEDs, including indications, side

effects, and licence status

Action to be taken after a

missed dose or after a

gastrointestinal upset

Reasons for referral (e.g. for

surgery)

Lifestyle

Employment

Independent living

Insurance issues

Disclosing epilepsy at work

(refer to voluntary

organisations for further

information)

Child care

Driving

Alcohol

Recreational drugs

Sexual activity

Sleep deprivation

Family planning

Safety

First aid

Safety in the home and at

work

Status epilepticus

Road safetySupport

Support organisations

(including contact details)

Claiming benefits

Support from social services

Issues for women

Contraception

Pregnancy

Breastfeeding

Menopause

SUDEP

There should be tailored information and discussion about the individuals relative risk of SUDEP information should be part of the counselling checklist for adults with epilepsy and their families and/orcarers.C

The risk of SUDEP can be minimised by optimising seizure control and being aware of the potentialconsequences of nocturnal seizures.GPP

Where families and/or carers have been affected by SUDEP, healthcare professionals should contact themto offer their condolences, invite them to discuss the death, and offer referral to bereavement counsellingand a SUDEP support group. C

Healthcare professionals have a responsibility to educate others about epilepsy so as to reduce the stigmaassociated with it. They should provide information about epilepsy to all people who come into contactwith people with epilepsy, including school staff, social care professionals and others.GPP


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Womenwith

epilepsy Women with epilepsy

Women (and, if appropriate, their family and/or carers or others closely involved) should be given informationabout contraception, conception, pregnancy and breastfeeding. Information should be given in advance of

sexual activity or pregnancy. C

Issues to be considered

Contraception

Risks and benefits of different contraceptive methods (including hormone-releasing IUDs).GPP Potential interaction with AEDs. N For women taking hepatic enzyme-inducing AEDs:

the progesterone-only contraceptive pill is not recommendedD the progesterone implant is not recommendedD combined oral contraceptive pill: a minimum initial dose of 50 micrograms oestrogen is recommended; if

breakthrough bleeding occurs, increase the oestrogen dose to 75 or 100 micrograms/day, and considertricyclingD

depot injections of progesterone: inform the woman that a 10-week (instead of 12-week) repeat injectioninterval is recommendedD

discuss additional barrier methods.GPP Emergency contraception: the dose of levonorgestrel should be increased to 1.5 mg and 750 micrograms

12 hours apart.D

Potential harmful effects of AEDs on the unborn child

Be aware of the latest data on the risk to the unborn child associated with AED therapy and the availabilityof counselling.GPP

Discuss the potential risk of harm to the unborn child associated with different AEDs with women ofchildbearing potential, and assess the risks and benefits of the individual drugs.N

Offer 5 mg/day folic acid to women taking AEDs before there is any possibility of pregnancy.D

Pregnancy

Care of pregnant women should be shared between the obstetrician and the epilepsy specialist.GPP Encourage notification of pregnancy to the UK Epilepsy and Pregnancy Register

(www.epilepsyandpregnancy.co.uk).GPP Issues to be considered and information to be provided include the following:

need for folateD possible effects of epilepsy on the pregnant woman and the fetus AEDs during pregnancyNGPP breastfeeding and epilepsy, including breastfeeding while taking AEDs risk of SUDEP and status epilepticus if AEDs are discontinuedC genetic counsellingD need for vitamin K for the newborn child.C

After the birth

Discuss safety precautions in caring for the baby (see Appendix D of the full guideline:www.nice.org.uk/CG020fullguideline).C

For further information about care during pregnancy, see the NICE guideline

(www.nice.org.uk/CG020NICEguideline)


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SpecialgroupsSpecial groups

People with learning disabilities

Diagnosis and investigation

Confusion may arise between seizure activity and stereotypical or other behaviours.C Obtain eye-witness accounts plus corroborative evidence (e.g. a video account), where possible: D

witnesses may need education to describe observations accurately.GPP Particular care and attention may be needed to help the person tolerate investigations.GPP Facilities should be available for imaging under anaesthesia, if necessary.D Consider neuropsychological assessment in people with epilepsy in whom learning disabilities and cognitive

dysfunction should be evaluated, particularly in regard to language and memory.D

Management

In developing the care plan, consider the possibility of adverse cognitive and behavioural effects of AEDtherapy.D

Explore every therapeutic option. B There is a higher mortality risk for people with epilepsy and learning disabilities discuss this with the

individual, their family and/or carersGPP Arrange a risk assessment, which includes:

bathing and showering preparing food using electrical equipment SUDEP managing prolonged or serial seizures the impact of epilepsy in social settings independent living.C

People from black and minority ethnic groups

Consider whether the person has different cultural and communication needs, including need for aninterpreter. D An interpreter should have cultural and medical knowledge; a family member is not usually suitable

(because of issues of confidentiality, privacy, personal dignity and accuracy of translation).D Provide information (including information on employment rights and driving) in an appropriate format or

through other means for people who do not speak or read English. D

Older people

The recommendations on the choice of treatment and importance of regular monitoring of effectivenessand tolerability are the same as for the general population. N

Young people with epilepsy

Transfer to adult care

Review diagnosis and management of epilepsy during the young persons adolescence.D

Before the transition to adult services is made: review diagnosis and management facilitate access to voluntary organisations, such as support groups and epilepsy charities.D

People with epilepsy who have learning disabilities should receive the same support and care as the generalpopulation of people with epilepsy. They also need the care of the learning disabilities team.GPP

The management and treatment of epilepsy in a person who has learning disabilities should be undertakenby a specialist, working within a multidisciplinary team.C

Multidisciplinary services provided jointly by adult and paediatric specialists have a key role in the care ofthe young person with epilepsy. They can facilitate the transition from paediatric to adult services and aidin the dissemination of information.D

During adolescence a named clinician should assume responsibility for the ongoing management of theyoung person with epilepsy. This clinician should: ensure smooth transition of care to adult services be aware of the need for continuing multi-agency support.GPP

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