Although major treatment decisions, such as when to start treatment, withdraw treatment or switch treatments, should be made in secondary care, the delivery and monitoring of treatment is best performed in primary care for adults. This can be supported by a shared management plan agreed between specialist services, the patient and general practice. A major review of the patient is desirable, most commonly performed as an annual review.1,2
- initiating and continuing AED treatment on the advice of a specialist (adults; for children the specialist will initiate treatment), unless there are specific local/individual reasons why this might not be appropriate
- continuing to prescribe AED treatment where management is straightforward and local circumstances and/or licensing allow
- monitoring seizures, aiming to improve control by adjustment of medication or re-referral to hospital services
- minimising side-effects of medications and their interactions
- facilitating structured withdrawal from medication as agreed by the hospital specialist and the patient.
The role of primary care obviously varies according to the status of the patient and local protocols.
Newly diagnosed patients
The decision to start AED treatment should be made by the patient and an epilepsy specialist.1,2 The relative risks of recurrent seizures (including the important risk of SUDEP) are weighed against the impact on the individual of taking long-term medication.2
If the patient and epilepsy specialist agree to start AED treatment, there is a good chance that seizure control can be achieved using one of the first-line drugs appropriate for the type of epilepsy. Those AEDs that NICE recommends as first-line agents for epilepsy monotherapy are shown (in alphabetical order) in Table 5. 1
Table 5: Drug options by seizure type (opens in a new window)
If started on medication, adult patients are usually discharged back to the care of their GP when the condition becomes stable (see adult care algorithm). 3 It is then important that regular reviews are arranged, either with the GP or another suitably trained member of the primary care team such as a specialist nurse, and that clear re-referral criteria are agreed.1,2
Although most people with newly diagnosed epilepsy respond well to AEDs, it is important to review their response to treatment as there is a risk of:
- incorrect diagnosis of epilepsy
- inappropriate choice of AED and side-effects
- side-effects of a cosmetic nature can be associated with some AEDs such as hirsutism and coarsening of the facial features as with phenytoin,4 and weight gain with sodium valproate5
- failure to take the prescribed AED
- underlying brain tumour2
- drug or alcohol abuse.2
Major changes to drug treatment such as withdrawal or addition of drugs should be made within the shared care treatment plan. Therefore, other than for planned titration up or down according to the individualised treatment plan, the patient will need to be re-referred to the epilepsy specialist to discuss changes in treatment.6
All people with epilepsy should have a comprehensive care plan that is agreed between the individual, family and/or carers where appropriate, and primary care and secondary care providers. This should include lifestyle as well as medical issues.1
All patients with epilepsy on a GP's list should be offered an annual review, and the actions noted on the patient record.6 While implementing the management plan and reviewing the patient, GPs and other healthcare professionals in primary care should be aware of the most commonly prescribed AEDs (Table 5) and their possible side-effects in patients.2
Adult care algorithm, adapted from NICE CG137, 20123
Click on the image above for a larger version.
For more information on box A go to www.nice.org.uk
Some AED side-effects are dose-related and predictable, and can be minimised by gradually increasing the dose up to the minimum effective dose.2 Straightforward adjustments to dosage or timing of doses that are expected within the shared care treatment plan can be made in primary care, but major changes such as withdrawal or addition of AEDs are best carried out under the supervision of a specialist.6
A number of side-effects are associated with AEDs and can be a reason for patients stopping treatment.6 These side-effects include weight gain, hair loss, ataxia, tremor, mood changes, tiredness, sleep disturbance, depression, rash, gum changes which can lead to tooth loss, and cosmetic changes including acne and hirsutism.6
Patients should be warned of the potential side-effects of their treatment and given clear instructions about what to do if side-effects develop, particularly if they develop bruising or drowsiness with vomiting or rash, especially in the first few weeks of treatment.2 During routine visits, the prescriber should monitor drug dosage and regimen, seizure frequency, adverse drug effects, adherence and other problems (medical or social).6 Repeat prescriptions for more than six months without seeing the patient should be avoided.6 An annual review to assess repeat prescriptions may be carried out by a pharmacist depending on the needs of the patient.
Drug therapy is not effective in all patients, and other possibilities may be explored. Healthcare professionals in primary care need to be aware of the availability of other treatments.
Psychological interventions can provide a useful adjunct to pharmacological treatment, especially when anxiety or stress is thought to precipitate seizures.2
If seizures are not controlled with AED treatment, children, young people and adults should be referred to tertiary services for possible surgery or vagus nerve stimulation (VNS). VNS is indicated for patients who are drug resistant but unsuitable for resective surgery.1
Surgery involves the removal or modification of part of the brain from which the seizure originates. This may involve removal of a small, localised area, or wider unilateral abnormality lobar, multilobar or hemispheric resection.7 It should be considered fairly early on in young people with uncomplicated focal epilepsy originating in the temporal lobes and unresponsive to AED treatment. Early surgical intervention is important, as a delay in curative surgery will make rehabilitation difficult. All children with evidence of a focal structural brain abnormality should be considered for surgery.7 Pre-surgical evaluation will require an experienced team with access to specialist magnetic resonance imaging (MRI) and electroencephalography (EEG) equipment. It is important to note that the suitability for surgery is dependent on investigations that include ictal EEG and specific MRI criteria, and not random EEGs. On epidemiological grounds, 30 people per million of the population per year could be evaluated for epilepsy surgery, and of these approximately one third (10 per million) would go forward for operation.
The results of surgery are good in patients who have been appropriately investigated and identified as suitable candidates. Approximately 70-85% of patients become completely seizure-free or only experience very occasional seizures following surgery.
Besides resective surgery for focal epilepsy, alternative approaches such as callosotomy and hemispherectomy can be used in other specific situations.8
The ketogenic diet is a high-fat diet primarily prescribed to children with drug resistant seizures. In children it can be effective in controlling seizures. However, it is less effective in adults and may be difficult for the patient to adhere to.1
A wide variety of complementary therapies are increasingly popular with patients, including acupuncture, chiropractic, herbal medicine, osteopathy, homeopathy and yoga. There is, however, no evidence that these improve seizure control, and some may trigger seizures or interact with AEDs (eg St John's wort and certain aromatherapy oils).2
Withdrawal or addition of AEDs should be carried out under specialist guidance
Patients who have been seizure-free for at least two years may be able to consider stopping AED treatment.2 There is, however, an increased risk of seizures associated with withdrawal of treatment. The decision to continue or withdraw medication should be taken by the individual, their family and/or carers as appropriate, and the specialist, after a full discussion of the risks and benefits of withdrawal. At the end of the discussion, individuals and their family (and/or carer as appropriate) should understand the individual's risk of seizure recurrence on and off treatment. This discussion should take into account details of the individual's epilepsy syndrome, prognosis and lifestyle.1 When AED treatment is being discontinued in an individual who has been seizure-free, it should be carried out slowly (at least two to three months), and one drug should be withdrawn at a time.2 Patients should also be advised to stop driving during withdrawal and for a period after the withdrawal is complete (currently six months).
Adherence to medication
The purpose of assessing adherence is not to monitor patients but rather to find out whether patients need more information and support9
Up to half of medicines prescribed are not taken as recommended. Healthcare professionals should be aware of how patients take their medicines.10
Non-adherence is defined as patient behaviour not matching agreed recommendations from the prescriber. Non-adherence is common: between a third and a half of all medicines prescribed for long-term conditions, a group in which epilepsy must be included, are not taken as recommended.9
Adherence must be considered in the context of shared decision making: patients have a choice in how they take their medicine. Intentional non-adherence implies a patient has re-evaluated a previously agreed decision. Unintentional non-adherence may result from poor memory or forgetting a dose, particularly when titrating AEDs.10
Practitioners have a duty to help patients make informed decisions about medicines and to use them to best effect. Patients should be encouraged to speak honestly about their medicine taking. Prescribers should use computer systems to look at ordering patterns of prescriptions. Medicines adherence should be discussed at each epilepsy review, and any interventions to address non-adherence should be tailored to the individual's specific difficulties.9
In the concordance model, therapeutic decisions incorporate different views contributed by patient and the professional. This may suppose effective communication within the consultation and beyond, such as support with adherence. The ideal, defined by the Royal Pharmaceutical Society of Great Britain (RPSGB), is that medical professionals and patients could openly discuss their reasons for adopting possibly differing stances toward medication and come to an agreement about treatment plans.9
Consistency of supply
In some people with epilepsy, consistent, stable serum concentrations of AED medication are required to maintain seizure control. Different preparations of some AEDs may vary in bioavailability or pharmacokinetic profiles and care needs to be taken to avoid reduced effect or excessive side-effects.1 This could result in loss of seizure control and could in turn lead to loss of driving licence or employment for patients, and an increased workload and cost for the NHS.11 Patients should therefore be encouraged to continue on the same formulation.
The Department of Health (DoH) has previously issued guidance on the Lamictal® (lamotrigine) patent expiry and generic substitution.12However this guidance has now been superseded by the more recent guidance from NICE which states:
Consistent supply to the child, young person or adult with epilepsy of a particular manufacturer's AED preparation is recommended, unless the prescriber, in consultation with the child, young person, adult and their family and/or carers as appropriate, considers that this is not a concern. Different preparations of some AEDs may vary in bioavailability or pharmacokinetic profiles and care needs to be taken to avoid reduced effect or excessive side effects. NICE 2012
Epilepsy Action believes it is important for people with epilepsy to have exactly the same version of their AED every time. Accordingly it is advised that prescriptions are written including the brand name of the AED, whether a generic or original brand. Epilepsy Action has also produced a "Don't Sub My Drugs" card, to help make sure AEDs are not substituted. This can be filled in with the name of the AED, the dose and name of the drug company and shown to the pharmacist to ensure exactly the same AED is given. Copies can be requested at www.epilepsy.org.uk
1National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.
2 Scottish Intercollegiate Guidelines Network (SIGN), 2003. Diagnosis and management of epilepsy in adults. A national clinical guideline. Edinburgh: SIGN.
3 National Institute for Health and Clinical Excellence (NICE), 2012. Epilepsy: Appendix C – Outline care algorithms Adults. [CG137]. London: NICE.
4 Epanutin Capsules 300mg SPC, 2004. Pfizer Limited
5 Epilim SPC, 2004. Sanofi-aventis.
6 Epilepsy Action, 2005. Role of Primary Care in Epilepsy Management 2. Leeds: Epilepsy Action.
7 Cross JH, 2011. Epilepsy Surgery in children: are we doing enough? Epilepsy Professional. [online] (Accessed 13/04/2012).
8 Betts T et al. 1998. Epilepsy needs revisited: A revised epilepsy needs document for the UK. Seizure. 7: 435-446.
9 National Institute for Health and Clinical excellence (NICE), 2009. Medicines Adherence. [CG 76]. London: NICE.
10 Leppik IE. 1988. Compliance During Treatment of Epilepsy. Epilepsia. 29 Suppl 2: S79-84.
11 Crawford P et al. 1996. Generic Prescribing for Epilepsy. Is It Safe? Seizure. 5: 1-5.
12 Department of Health, 2005. Treatment for Epilepsy: Generic Lamotrigine. [online] (Accessed 13/04/2012).