Managing Epilepsy in Primary Care

See also:

Epilepsy in Children and Young People
Epilepsy in Adults
Epilepsy in Elderly People
Contraception and Special Groups

Epilepsy is the most common serious neurological condition seen in primary care. Frequently, its management and patients' experience is less than ideal. With effective management, approximately 70% of those with active epilepsy can become seizure free, but currently only about half are seizure free.¹

A drive to improve epilepsy management in General Practice has been exerted by several key initiatives:

• The new General Medical Services (nGMS) contract²
• National Institute for Clinical Excellence (NICE) guidelines for epilepsy³
• National Service Framework (NSF) for long-term conditions⁴

Areas of responsibility in General Practice include:

1. The identification of patients with epilepsy.
2. The systematic review of all patients with epilepsy on at least annual basis.
3. The identification and effective referral of patients requiring specialist review.
4. The effective recording of data in order to fulfil the requirement of the nGMS contract and auditing of care to improve epilepsy management in the long-term.

• UK prevalence of epilepsy (treated and untreated) is about 1 in 130 of the general populace.
• Lifetime prevalence is thought to be between 2 and 5%.
• Annual incidence in a developed country is about 1 in 2,000 with peaks of onset in children and in the elderly.

Emergency care

See separate record 'Status Epilepticus Management'.

Diagnosis

• Following a first seizure, an individual may go to A&E or their local GP. An accurate history together with an eyewitness account, where available, is important to discern whether the 'attack' is indeed a seizure. A thorough physical examination should also be undertaken.
• The healthcare team at this initial point of contact should be responsible for onward referral and providing information to the individual/carer/family about how to recognise any further seizures, first aid and the importance of reporting further attacks whilst awaiting diagnosis.
• If a first epileptic seizure is suspected, or where there is diagnostic uncertainty, the individual must be referred on to a specialist service (adult or paediatric neurology dependent on age) for full diagnosis. 'First fit' clinics should be accessible urgently, within a fortnight.
• Specialist involvement is critical to prevent incorrect diagnosis or classification of epilepsy which in turn can lead to inappropriate treatment and persistence of seizures.

Shared care

The care of epileptic patients has been traditionally shared between primary and secondary care. After a new diagnosis and investigation, patients are usually commenced on treatment by their specialist. All patients with epilepsy should have:

• An accessible point of contact to specialist services.
• A care plan agreed between the individual/family/carers and primary and secondary care.
• A named individual to contact for information if required.

Once stable, patients are usually discharged back to their GP and primary care team. In some areas, specialist epilepsy liaison nurses or GPSIs may provide support for those working in primary care. Some PCTs have commissioned Local Enhanced Services (LES) in Epilepsy.

Reviews

• Regular review of adults should occur at least annually.
• Children should receive their structured review from their specialists.
• Reviews should include:
  • Occurence of further fits and fit frequency
  • Drug compliance (check use of repeat prescriptions)
  • Side-effects of drugs
  • If fit-free >2 years, possibility of withdrawing medication

Consider special groups' needs:

• Women of reproductive age⁷:
  • Contraception, particularly in women using enzyme-inducing anti-epileptic drugs (AEDs)
  • Pre-conceptual counselling (risk of teratogenicity associated with AEDs versus risk of poorly controlled seizures, consider specialist referral if on sodium valproate to switch to alternative AED, methods of prenatal diagnosis, need for higher dose folic acid pre-pregnancy and for first trimester, safe care of children)
  • Pregnancy (specialist obstetric care indicated, post-natal review of epilepsy)
• Those with learning disability:
  • Allow time for the consultation
  • Ensure that the patient comes with a carer who knows them well and who can bring information about seizure type and frequency, possible side-effects of medication, as well as general health and behaviour
  • Multidisciplinary care is required - management and treatment of the epilepsy should be undertaken by a specialist. Community learning disability nurses can liaise between specialist services, patients and carers
  • Management and treatment of epilepsy should be undertaken by a specialist working within a multi-disciplinary team
  • Diagnosis is often difficult - eyewitness accounts and corroborative video evidence may help
  • Choice of AEDs should consider likely side-effects impacting on cognition or behaviour
  • Risk assessment to include bathing and showering, preparation of food, use of electrical items and impact of epilepsy on a social setting
• The elderly:
  • Particularly vulnerable to injuries during seizures
  • Clinical complications of neurodegenerative, cerebrovascular, neoplastic and psychiatric comorbidities
  • Drug interactions and side-effects are particularly common. AEDs should be chosen with this in mind. Lamotrigine and gabapentin appear better tolerated than carbamazepine in elderly people
  • Loss of confidence, concerns surrounding stigmatisation and reduced independence may lead to premature admission to nursing homes and residential care. Appropriate support and education may help to counter this
• Drivers:⁸
  • Any patient should be advised to stop driving and notify DVLA and motor insurance company following a seizure
  • DVLA recommends avoiding driving for 1 year after a seizure
  • If seizures only whilst asleep for the last 3 years, patient may drive
  • If medication is being withdrawn, must stop driving until remaining seizure-free for 6 months off medication
  • Group 2 license holders (light goods and public service vehicles) need to be seizure-free for 10 years
  • Cyclists should be advised to avoid cycling in traffic

Re-refer to specialist where:

• Poor control.
• Seizures have continued for more than 5 years.
• Side-effects or poor tolerance of current medication.
• Concurrent illness complicating management.
• Need for pre-conceptual advice.
• Concerns about underlying cause of fits.
• For withdrawal of AEDs

Monitoring⁵

Medication review

• Enquire regarding seizure control, medication side-effects and concordance.
• Ensure prescription is of the same named drug brand - generic substitution may alter bio-availability and seizure control.
• Assess osteoporosis risk in those on AEDs. Offer lifestyle and dietary advice.If immobile, with a low calcium dietary intake or poor exposure to sunlight, consider vitamin D supplementation.
• Blood tests are not routinely required. Those on enzyme inducing drugs should have the following blood tests every 2-5 years: FBC, U&Es, LFTs, vitamin D levels, Serum Ca and ALP.
  Note: asymptomatic abnormalities in these test results are not an automatic indication for altering medication.
• Similarly, drug monitoring is not routinely recommended. Indications for AED levels include where there are concerns surrounding adherence, toxicity is suspected or where pharmacokinetic interactions are difficult to manage.

Practice administration

The nGMS contract recommends certain clinical indicators be collected to monitor the care of epileptic patients.
In order to achieve maximum quality points, the following are required:

• A practice register of patients aged over 18 and receiving drug treatment for epilepsy (Epilepsy 5). Whilst the nGMS contract only requires a register of adults with epilepsy, it is still important that younger patients are identified to ensure the handover to adult care and to ensure they are receiving regular paediatric review.
• A recall system for ensuring regular review (either opportunistic or linked to medication review).
• Record of seizure frequency in the previous 15 months (Epilepsy 6).
• Recorded medication review in the previous 15 months (Epilepsy 7).
• Percentage of epilepsy register who have been seizure-free for 12 months (Epilepsy 8).

A simple proforma (usually in the form of a computer template) can be developed.
Suggested points to cover:

• Regular medication review for adults (annual or six-monthly).
• Medication side-effects, dosage and frequency.
• Type and number of fits in the last year, document date of last fit.
• Pre-conception and contraception counselling in women.
• Driving advice given and documented.

Where epilepsy management is good (based on the proportion of seizure-free patients), there is an inverse relationship with the number of epilepsy-related emergency hospitalisations.¹¹

Be aware of the broader implications of a diagnosis of epilepsy:

• Social stigmatisation and occupational issues.
• Psychosocial problems: anxiety and depression are more common than in the general population.
• Developmental problems in children with early onset seizures.
• Specific cognitive and learning difficulties impacting on education if not recognised.
• AED side-effects.
• Physical trauma secondary to seizures.
• Risk of fetal malformation associated with AEDs.
• Increased mortality rate:
  • Sudden unexplained deaths in epilepsy (SUDEP) - approximately 500 deaths per annum in the UK.
  • Deaths due to accidents during seizures - approximately 100 deaths per annum in the UK.
  • Deaths due to status epilepticus - approximately 70 deaths per annum in the UK.