One in three patients with epilepsy is inadequately controlled. Dr Dominic Heaney explains how the RCP developed guidelines to optimise their care

Epilepsy is a common, chronic disorder, affecting up to half a million people in the UK. 1 For as many as 30% of these patients, seizures are not controlled by medication and the care of these patients imposes a significant burden on health services.2 Several major governmental and professional body reports have highlighted the care received by these patients as deficient.3-5

The epilepsy guidelines Adults with Poorly Controlled Epilepsy, published in 1997 by the Royal College of Physicians, were formulated in an attempt to address some of the deficiencies identified by these reports. The aim was to provide recommendations for the optimal management of this patient group.6

Although the guidelines are aimed at clinicians in secondary care who manage the care of people with epilepsy, it was intended that other health professionals, particularly GPs, would find them helpful.

Development of guidelines

The guidelines were developed under the aegis of the Research Unit of the Royal College of Physicians, the Institute of Neurology and the National Society for Epilepsy. A guideline development group was formed and coordinated by two senior neurologists. A researcher worked full time on the project.

The development group was multidisciplinary. Members of the development group discussed evidence relating to the key management issues for patients with poorly controlled epilepsy. The guidelines were agreed and reviewed by selected neurologists from oˆtside the development group. Where there was disagreement, editorial action was taken, bearing in mind the strength of the evidence.

The level of evidence and strength of the associated recommendations were graded, where possible, using a system adapted from the Canadian Task Force classification (Table 1). Unless otherwise indicated, all evidence cited is at level III and recommendations at level C. The project was funded by the NHS Executive.

Table 1: Grading system for level of evidence and strength of recommendations
Level of evidence Criteria
I Well-designed, randomised, controlled trials, meta-analyses or systematic reviews
II Well-designed, non-randomised, prospective or retrospective controlled trials or other observational studies
III Uncontrolled trials or descriptive studies, or consensus agreed in reports of expert committees or respected authorities
Strength of recommendation Criteria
A Directly based on level I eveidence
B Directly based on level II evidence or extrapolated recommendation from level I or II eveidence
C Directly based on level III evidence or extrapolated from level I or II evidence

Key points

Adults with Poorly Controlled Epilepsy is divided into two sections: clinical guidelines for treatment; and practical tools for aiding epilepsy management.

The clinical guidelines can be summarised into six sections, although the reader is encouraged to refer to the complete publication, as this summary may not reflect the views of the authors of the guidelines.

The section entitled 'Practical tools for aiding epilepsy management' is intended to form the basis for audits of epilepsy care that can be performed in both primary and secondary care.

The following summary emphasises aspects of the guidelines that may be relevant to GPs.

Diagnosis and treatment

Diagnosis: The diagnosis of epilepsy should be confirmed, and where possible its cause established.7-9 All aspects of a patient's medical and psychosocial health affected by epilepsy should be identified and addressed.

Treatment: Should be appropriate for seizure type and syndrome. Patients should be fully informed about drug choices, potential side-effects and interactions, and where possible should participate in the decision-making process.

If epilepsy is not well controlled with monotherapy, patient compliance should be checked and the maximum tolerated dose used before proceeding to alternative monotherapy or 'add-on' therapy.

Choice of drug: Choice of first-line drug is dependent on the type of seizure (Table 2). The order in which drugs are used is a balance of efficacy, tolerability and cost.

Table 2: Recommendations for choice of anti-epileptic therapy
Seizure onset Seizure type

First-line therapy

Second-line therapy

Simple partial
Complex partial
Secondary generalised

Valproate (A)


Generalised Absence** Valproate (B)


  Myoclonic*** Valproate (B)


  Primary generalised Valproate (B)


* One major randomised controlled trial demonstrated carbamazepine to be superior to valproate in terms of seizure control for adults with partial-onset epilepsy 10
** Carbamazepine and gabapentin may make absences worse
*** Carbamazepine, gabapentin and lamotrigine may make myoclonus worse
**** Vigabatrin should not be used in the treatment of idiopathic generalised epilepsy

The use of generic drugs is acceptable in most patients, but changes to a formulation should be made with care.11

Intermittent use of benzodiazepines and acetazolamide is a way of preventing clusters of seizures or catemenial epilepsy, without inducing tolerance.

Special patient groups:

Older patients require particular care because they may have other medical problems and be receiving many different medical treatments. They may also have lower thresholds for toxicity and side-effects.12

Patients with learning difficulties may be less able to communicate symptoms of side-effects or toxicity, and unusual symptoms or signs and behavioural difficulties may complicate their assessment. EEGs may be difficult to interpret. Patients may be unable to consent to treatment.

Women will be considered later in the text.

Drug monitoring: The relationship between serum drug level and patient clinical response varies greatly between individuals, and the serum anti-epileptic drug (AED) level may be surprisingly unhelpful in clinical management.

The main indications for drug level measurement are to detect or confirm poor compliance with medication, or to adjust phenytoin dose.13 On certain occasions, serum levels of carbamazepine, ethosuximide and phenobarbitone may need to be measured. Other drug levels, e.g. valproate, lamotrigine and the other 'new' AEDs, correlate poorly with clinical efficacy.


EEG: EEG can be used to support a diagnosis of epilepsy and help to determine its type and severity. Nevertheless, up to 50% of adult patients with epilepsy may have a normal EEG on a single recording.14-16 Sensitivity is increased by repeated tests, prolonged EEG or video-recorded EEG.17,18 A 'positive' EEG indicates a high probability of epilepsy (around 96%).

Magnetic resonance imaging: MRI is the structural imaging modality of choice for investigating patients with epilepsy.19 Where MRI is not available, computed tomography is a reasonable substitute. MRI is indicated for all patients with epilepsy, but may not be necessary where patients have a definite electroclinical diagnosis of idiopathic generalised epilepsy or benign epilepsy of childhood with centrotemporal spikes,20 or in acute medical emergencies.


Surgical treatment for epilepsy is performed at specialist centres after careful assessment of each individual patient. Surgery may offer a complete cure, or significant palliation for 5–10% of patients. Referral to a specialist centre for assessment will allow the likely risks and benefits of surgery to be evaluated and discussed with the patient and his/her family. The evaluation process can take up to a year in many cases.

Evaluation for surgery should be considered in patients:

  • With a firm diagnosis of epilepsy for at least 3 years
  • Inadequate response to at least four AEDs
  • Severe and disabling epilepsy (this should take into account patients' views)
  • No other contraindications to surgery
  • Willing to consider surgery.

Contraception and pregnancy

Pregnancy should be planned and carefully supervised. Specific information is best obtained by referring the patient to a neurologist and a family planning clinic.

Contraception: Many AEDs are hepatic enzyme inducers and therefore reduce the efficacy of hormonal contraception. For these patients, adequate contraception will require oral contraceptive pills with an oestradiol content of at least 50µg.22, 23

An injectable long-term contraceptive, e.g. Depo-Provera, may be a useful alternative. The kinetics of the contraceptive agent is not affected by enzyme-inducing drugs.24

Preconception counselling: The risk of congenital defects is two- to three-fold higher for women with epilepsy taking AEDs, compared with the 'normal' population (B).25 The higher risk is due to a combination of genetic factors and the effect of AEDs on the developing child. These risks are best explained by an epilepsy specialist.

Preconception risk reduction:

  • Establish the woman on the lowest effective dose of AED 26
  • Patients on polytherapy should ideally be converted to monotherapy (B) 27, 28
  • Where available, patients should take slow-release formulations of their AED (especially valproate) 29,30
  • Check plasma level of AED at base line 31
  • Patients should take folic acid before and during pregnancy (B)32, 33

During pregnancy: Patients taking AEDs should take 4–5 mg/day of folic acid during pregnancy (B/C).32,33 AED dosages may need to be adjusted during pregnancy to achieve adequate seizure control.

Investigations should include high-resolution ultrasound scanning and measurement of alpha-fetoprotein.

Vitamin K 20 mg/day should be taken during the last month of pregnancy to help protect against haemorrhagic disease of the newborn.

Labour: Epilepsy is not an absolute indication for caesarean section or induced labour (B).34 Women should continue to take anti-epileptic drugs during labour.

Postpartum: In most cases, AED dosages should gradually be altered to those taken before pregnancy.35

Breast feeding is rarely contraindicated; indeed, sudden withdrawal of breast milk may lead to symptoms of AED withdrawal in the child.35

If the mother has poorly controlled seizures that put the baby at risk of harm, advice should be given about safe baby care, e.g. feeding seated on the floor.36

Mental health problems

Up to 50% of people with epilepsy have psychological problems.37 These problems may be seizure related, but in most cases mental health problems are similar to those experienced by people with any chronic illness and should be treated in a similar way.

Patients suspected of having non-epileptic seizures (pseudo-seizures) should be referred to a specialised epilepsy unit for neurological and psychiatric assessment.

Up to 30% of people with learning difficulties also have epilepsy. Their needs are complex and are best addressed by a multidisciplinary team.

Consider referring patients with poorly controlled epilepsy to a clinical psychologist if they appear to have poor psychological adjustment to their condition (II),38-40 cognitive dysfunction or learning difficulties.

Other healthcare professionals

General practice: Formalised 'shared care' may result in more effective and efficient management.41

Patients should see the same doctor at each visit, if possible.

GPs should not be expected to be experts in epilepsy and should be given all relevant information (Table 3) by the hospital service.

Table 3: Communication between secondary and primary care – specialists' letters to GPs
Seizure type(s)
Epilepsy syndrome
Results of investigations

Instructions regarding medication/changes in medication including:

  • Time scale for change
  • Appropriate dose increments for increasing or decreasing medication
  • Management of antiepileptic drugs (AEDs) while changing the dose of another AED
  • Advice about the use of generic as opposed to brand names
Reasons for changing/discounting an AED
Possible side-effects of medication
The need or otherwise for serum monitoring
Implications of co-morbidity
Interactions with other medications, e.g. contraceptives
A patient's changing circumstances which have implications for management, e.g. pregnancy, employment, driving etc.
Issues to be addressed regarding the patient's psychological and social wellbeing
Indications for referral to specialist and date of next specialist appointment

Both GP and hospital records should contain a checklist of key issues that have been discussed with the patient. In many cases, the patient could also carry this checklist.

Other healthcare professionals: Patients should have access to counselling and information about clinical and non-clinical matters relating to their epilepsy. This should be provided by a healthcare professional with specialist experience in epilepsy and counselling skills.

Written information regarding all matters relating to epilepsy should be available to people with epilepsy. These should include the names and addresses of patient organisations such as the National Society for Epilepsy and the British Epilepsy Association.


Governmental and professional reports have criticised the care that people with epilepsy receive as being fragmented and inconsistent.

The clinical guidelines Adults with Poorly Controlled Epilepsy highlight general management principles and make recommendations based on the best clinical evidence. The guidelines are clear to read and have been widely distributed among medical professionals. Together with Practical Tools for Aiding Epilepsy Management, this publication has the potential to improve the care for people with epilepsy.


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Guidelines in Practice, December 1998, Volume 1
© 1998 MGP Ltd
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