Epilepsy is a common condition. In Scotland, between 20 000 and 40 000 individuals are receiving treatment for epilepsy, and there are between 2000 and 3500 new diagnoses each year.1
There are very few epilepsy specialists, so many patients with epilepsy have been diagnosed and treated by nonspecialists in both primary and secondary care. There is evidence that this management is often suboptimal.2,3
SIGN published its original guideline on epilepsy in 1997, and since then there have been significant developments in diagnosis and management. Three new anti-epileptic drugs have been licensed, while the number of epilepsy specialist nurses has greatly increased.
The revised guideline includes new sections on the management of status epilepticus, non-pharmacological treatment and issues relating to contraception, pregnancy and HRT. The guideline development group has been careful not to produce a textbook on epilepsy, rather a comprehensive guide that can be used by specialists and non-specialists alike.
Epilepsy is very topical currently in general practice as it is one of the ten clinical areas in the quality and outcomes framework of the new GP contract.
There has been a recent fatal accident enquiry in Scotland by Sheriff Taylor, into the death of a 17-year-old girl in Glasgow in 1998, which was classified as a sudden unexpected death in epilepsy.
In his findings, the Sheriff recommends that practices audit the care of their epilepsy patients and consider establishing an epilepsy clinic. He supports the recommendation in the SIGN guideline for shared care of individuals with epilepsy, involving the patient and carers, the GP and relevant specialists. His recommendations have been distributed to all NHS boards and trusts in Scotland.
How good is the evidence?
SIGN grades evidence from 1++ for high quality meta-analyses, systematic reviews of randomised controlled trials or RCTs with a low risk of bias, to 4 for expert opinion. Recommendations are graded A to D accordingly (Figure 1, below).
|Figure 1: Key to evidence statements and grades of recommendations|
The guideline Diagnosis and Management of Epilepsy in Adults, has four principal sections, dealing with diagnosis; treatment; contraception, pregnancy and HRT; and models of care. In addition, there are useful sections on information for patients and carers, implementation and audit, and outcome measures.
Each section required much evidence to be reviewed and many thousands of references, and not surprisingly, the most robust evidence was in the section on treatment. It is in this area that a number of excellent RCTs have been carried out, and several of the recommendations in this section are graded A.
In other sections, the evidence was not as robust and most of the recommendations are graded C or D, reflecting the lack of randomised controlled trials in these areas.
The principal recommendations from the section on diagnosis are that epilepsy should be diagnosed by a specialist, and preferably in a first seizure clinic. An algorithm for diagnosis, classification and investigation is contained in the quick reference guide (Figure 2, below).
|FIgure 2: Algorithm for diagnosis, classification and investigation contained in the quick reference guide|
The history, taken from the patient and an eyewitness, is crucial for diagnosis. Specialist investigations such as electroencephalography should be used appropriately. Magnetic resonance imaging is the brain imaging modality of choice in epilepsy. Computed tomography should be used only if MRI is contraindicated or in an emergency. Video EEG may be useful if there are diagnostic difficulties.
The treatment section covers when to start anti-epileptic drug treatment and when consideration should be given to stopping treatment.
Four anti-epileptic drugs are recommended for first-line treatment of partial and secondary generalised seizures: carbamazepine, sodium valproate, lamotrigine and oxcarbazepine. For primary generalised seizures, sodium valproate and lamotrigine are recommended (Figure 3, below).
|Figure 3: Treament algorithm contained in the quick reference guide|
The choice of anti-epileptic drug for an individual patient should be directed by the side-effect and interaction profiles.
Advice is also given on combination therapy and surgical referral for drug resistant epilepsy. Routine testing of blood levels of anti-epileptic medication is not recommended.
Information has been included about the use of psychological treatments and complementary therapies in epilepsy, and special consideration is given to the needs of those with epilepsy and learning difficulties.
The quick reference guide contains a useful algorithm for the management of status epilepticus.
Contraception, pregnancy and HRT
This section contains current guidance on contraception for women with epilepsy; it also covers pre-conceptual counselling, which is important for all women with epilepsy, as many pregnancies are still unplanned.
All anti-epileptic drugs are associated with an increased risk of fetal malformation, so they are recommended for use in pregnancy only if the benefits outweigh the risks.
A woman should conceive on the lowest effective dose of one anti-epileptic drug appropriate for her epilepsy syndrome. All women with epilepsy who are planning to become pregnant should be prescribed a daily dose of 5mg folic acid before conception until the end of the first trimester. Vitamin K1 supplements are recommended in the last month of pregnancy if there are additional risk factors for haemorrhagic disease of the newborn. All infants of women with epilepsy should be given 1mg of vitamin K1 intramuscularly at birth. An obstetrician and an epilepsy specialist should supervise the care of pregnant women with epilepsy.
Recommendations on the management of labour and seizures during labour have been included in the guideline.
A woman’s seizure pattern may change at the menopause. HRT should be prescribed for the same indications as in women who do not have epilepsy.
Models of care
The SIGN guideline development group has recommended that a structured management system for epilepsy should be established in primary care. As with other chronic diseases, an annual review is desirable. Box 1 (below) describes the elements necessary for a successful shared care management system.
|Box 1: Essential elements of a shared care management system|
The recommendations for secondary care include establishing services to enable patients with recent onset seizures to be seen within 2 weeks of onset and providing services to review patients with drug-resistant epilepsy. Subspecialty clinics should also be available for individuals with learning disabilities, adolescents, pregnant women and for patients referred for surgery.
It is recommended that each epilepsy team should include epilepsy nurse specialists.
Information for patients and carers
Individuals with epilepsy and their carers need clear, accurate and appropriate information and advice. A checklist is included in the guideline to help healthcare professionals to give epilepsy patients and carers the information they need in an appropriate format. This information should be reinforced at subsequent contacts.
Included in the guideline is a list of useful contact details for epilepsy organisations, including websites.
This comprehensive guideline covers a condition that is common in general practice and that is not always optimally managed. It will be useful as a reference guide for all GPs and healthcare workers who see patients with epilepsy, and will provide an evidence-based framework for those planning to set up practice-based epilepsy clinics.
There will be difficulties in implementing the guideline, both in primary and secondary care. Patients with long-standing epilepsy may be reluctant to attend planned review clinics because they fear that changes may be made to their treatment, or that poor control may be identified which may affect their employment or their eligibility to hold a driving licence. There is also still, unfortunately, a stigma attached to epilepsy.
There are not enough epilepsy specialists, and waiting lists are long. There may be delays in access to EEG and MRI. The recommendation that patients should be seen within 2 weeks in first seizure clinics will be difficult to achieve. One way forward is to establish a managed clinical network for epilepsy in each area, to include interested clinicians, field workers and patient representatives, and some areas in Scotland have already taken this step.
This should improve patient care by setting quality standards based on the SIGN guideline. Resources would follow and improve-ments in care could be audited against the standards.
SIGN 70. Diagnosis and Management of Epilepsy in Adults – A national clinical guideline can be downloaded free of charge from the SIGN website: www.sign.ac.uk
- Sander JW, Shorvon SD. Epidemiology of the epilepsies. J Neurol Neurosurg Psychiatry 1996; 61: 433-43.
- Smith D, Defalla BA, Chadwick DW. The misdiagnosis of epilepsy and the management of refractory epilepsy in a specialist clinic. QJM 1999; 92: 15-23.
- Scheepers B, Clough P, Pickles C. The misdiagnosis of epilepsy: findings of a population study. Seizure 1998; 7: 403-6.