Consensus Conference On Better Care For Children And Adults With Epilepsy September 2002

Final Consensus Statement

INTRODUCTION

Epilepsy is the most common serious neurological condition affecting over 300,000 people in the UK. It occurs throughout life and is a potent cause of disability and social disadvantage. It may cause untimely death; each year at least 1000 people in the UK die as a result of epilepsy.

Epilepsy is not a single disease. It is misdiagnosed to an alarming extent. Around a third of those treated for epilepsy have been given a wrong diagnosis, largely because there are not enough specialists who have sufficient clinical experience of this complex condition. With appropriate management around 70% of people with epilepsy have the potential to become seizure free. Secure diagnosis, treatment tailored to the individual and continuing integrated care and support are essential.

There is an urgent need for national standards of clinical practice to be implemented and monitored. Despite several recent authoritative reports and recommendations health care for people with epilepsy is extremely patchy and reflects lack of direction and planning. Substantial new resources are required to address these serious deficiencies.

This consensus statement addresses four specific questions relevant to improving the care of children and adults with epilepsy.

WHO SHOULD MAKE THE DIAGNOSIS OF EPILEPSY AND WHAT INVESTIGATIONS SHOULD BE DONE - IN CHILDREN AND ADULTS?

1. Diagnosis and management should take place in the context of a properly resourced integrated clinical network. This should include patient and carer input, primary, secondary and tertiary care, epilepsy specialist nurse and other support services including the voluntary sector.

2. Children and adults should have separate identifiable epilepsy services. Access should be within two weeks of referral.

3. Diagnosis should be confirmed by a consultant with expertise in epilepsy as demonstrated by:

   • training and continuing education in epilepsy
   • peer review of practice
   • regular audit of diagnosis

   Epilepsy must be a significant part of their clinical workload (equivalent to at least one session a week).

4. A full history including a witness account is paramount. Many patients with "attacks" will not have epilepsy. It is vital to increase the awareness of the differential diagnosis of "attacks" in primary and secondary care in order to ensure appropriate investigation (including ECG) and management.

5. Home videos of attacks can help in the diagnosis

6. When it is clinically improbable that an attack is epileptic, a routine (inter-ictal) EEG could be misleading and should not be undertaken. When an attack is considered likely to be an unprovoked epileptic seizure an EEG can be useful in diagnosis, prognosis and defining the syndrome. This should be available within 4 weeks.

7. Other EEG techniques (sleep, ambulatory and video telemetry) should be available within the network.

8. MRI should be available within 3 months to inform clinical management. It will be required for most adults and about half the children with epilepsy. Each network should have standard protocols for imaging and ready access to MRI under general anaesthetic or sedation.

9. The expertise of those reporting EEG and MRI should be demonstrated, audited and reviewed.

SHOULD FIRST LINE TREATMENT OF EPILEPSY BE DIFFERENT BETWEEN MALES AND FEMALES?

1. Epilepsy presents particular problems for women of childbearing age.

2. Taking any anti-epileptic drug (AED) during pregnancy may harm the unborn child, but stopping or changing treatment can compromise control of seizures with devastating effect on the safety of mother and child.

3. The full effects and long-term consequences of foetal AED exposure, particularly to the newer drugs, are still unclear.

4. There is some evidence that sodium valproate and polytherapy (more than one AED) present particular problems. They are associated with a higher rate of major malformations and may be associated with increased educational needs and lower IQ in offspring. Some women may still be best treated with valproate or polytherapy but this must be informed patient choice with the guidance of a specialist.

5. These factors should influence the choice of AED for girls and young women from the time of diagnosis. The ongoing review of treatment should include pre-conception planning.

6. The evidence available suggests that AEDs have little effect on fertility. Whether or not there is a link between any specific AED and polycystic ovary syndrome is not clear. Some AEDs can interfere with the efficacy of the contraceptive pill.

WHAT IS THE ROLE OF POLYTHERAPY IN THE TREATMENT OF EPILEPSY?

1. A positive therapeutic partnership between the healthcare team and the patient/carer is essential to encourage compliance and achieve the best possible outcome for the patient.

2. A single AED (monotherapy) will control seizures in most people and is the preferred treatment.

3. When an AED is only partially effective, another may be added aiming for monotherapy with the new drug. It may become apparent that treatment with two agents provides better seizure control, but polytherapy increases side effects and can reduce compliance. It is unusual for a third concurrent drug to confer additional benefit.

4. There is little evidence for "rational" polytherapy based on mechanisms of action. The possibility of synergy between AEDs exists but collaborative data are required.

5. Before embarking on multiple drug combinations the diagnosis should be reviewed and further specialist advice sought. Surgery may be curative in selected individuals and early referral should be made.

6. In patients already on polytherapy, especially when seizures are not controlled, careful consideration should be given to reducing the number of AEDs.

HOW SHOULD SERIAL SEIZURES AND STATUS EPILEPTICUS BE TREATED?

1. Convulsive status epilepticus (CSE) is a seizure or series of seizures lasting for at least 30 minutes. CSE carries risks of brain injury, organ failure or death. Prevention and early treatment are vital.

2. Early treatment of serial seizures and prolonged convulsions in the community is recommended. Primary care physicians and paramedics should be trained in the appropriate use of benzodiazepines. For susceptible patients there should be an agreed, individual written protocol identifying risk factors and early intervention. Their carers should be appropriately trained.

3. Rectal diazepam has enabled early intervention in the community but administration may be undignified and impractical. Buccal/nasal midazolam is unlicensed but appears to be effective, safe, and is preferred by patients and carers. It is already used particularly in older children and those with learning disability. It should be available for appropriate patients subject to specialist guidelines, protocols and training.

4. CSE is a medical emergency which is more difficult to treat the longer it continues. There should be agreed guidelines for immediate hospital treatment. The British Paediatric Neurology Association guidelines for the treatment of status have been widely adopted. Equivalent national guidelines for adults are urgently needed.

5. EEG is invaluable in the management of CSE. When seizures are difficult to control or recur the patient should be transferred to a unit with EEG monitoring.

6. There is a need for better training in the recognition and management of non-convulsive status epilepticus especially in children, those with learning disability and the elderly.

7. Greater awareness of the possibility of non-epileptic status in teenagers and adults will increase its recognition and avoid inappropriate treatment. EEG during the events is useful to confirm that diagnosis

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Graeme McAlister,
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