Diagnosis and management of epilepsy in adults
Section 5: Models of care

5.1 Models of primary and shared care for epilepsy

There are few models of care for epilepsy in primary care described in the literature. These have been practice-based descriptions but there has been no general adoption of any particular model.

Several descriptive studies have indicated the shortfalls of epilepsy management in primary care. Only 37% of epileptic patients have consulted their GP about their illness within the last year, with “little evidence of any regular review being undertaken” and “counselling about non-clinical aspects... is ... inadequate”.271 Evidence level 3

Such shortfalls are reflected in descriptive studies of patients’ views. “Only around a fifth of patients felt that their care is being (properly) shared between hospital and general practice”, and “provision of information (about epilepsy) is perceived to be poor at all levels”.272 “In conclusion general practice care for epilepsy is still reactive”.273 Evidence level 3

However, “most people with epilepsy (67.6%) would prefer their care to be community based, especially older patients and patients with mild epilepsy”.272 Also “61% of patients would prefer their care to be shared between primary and secondary services”.273 Evidence level 3

The primary care needs of patients with epilepsy have been well stated in a UK epilepsy needs document.274 These include the suggestion of a structured annual review, as has now become common with other chronic diseases, such as asthma and diabetes. Suggested tasks for primary care are listed in the document. Implementation of such management in primary care would be facilitated by the deployment of specialist epilepsy nurses, who can liaise between primary care and hospital care, and promote a shared care model.272 Evidence level 3




5.2 Models of secondary and tertiary care for epilepsy

5.2.1 ROLE OF EPILEPSY CLINICS

The need for clinical epilepsy services is outlined in Annex 3.

A Cochrane review examined the evidence for the effectiveness of epilepsy clinics in comparison to medical clinics.275 Only one randomised trial was identified and this was excluded on methodological grounds. Therefore, relevant clinical studies have not yet been undertaken to establish the effectiveness of epilepsy clinics.

Current preferred practice is for epilepsy clinics to be developed in hospitals. These clinics provide the expertise of epilepsy specialists, epilepsy specialist nurses, access to further specialised investigations and, when necessary, to inpatient facilities. Epilepsy clinics also have important roles in teaching and research in epilepsy.

There are two broad roles for epilepsy clinics:

Some epilepsy centres have developed further specialisation of the epilepsy clinics such as ‘fast-track’ clinics for early diagnosis, clinics for epilepsy in children, in young people, in pregnancy, and in learning disability.



5.3 Role of epilepsy nurse specialists

The Joint Epilepsy Council276 noted that epilepsy specialist nurses are cost effective, a point also highlighted by another study.277 Epilepsy nurses can also reduce the length of stay in hospital for people with epilepsy and increase patient satisfaction.277 Evidence level 2++,2+,4

A Cochrane review concluded that although the potential benefits of epilepsy nurses varied in all studies reviewed, there was a perceived higher quality of care, less time spent on travel, reduction of the waiting times, and better continuity of care noted by the patients who had contact with an epilepsy nurse specialist.278 Evidence level 2++,2+,4

High-quality studies have not yet been performed to identify the effectiveness of epilepsy specialist nurses. In the studies reviewed, no roles performed by epilepsy nurse specialist were shown to be detrimental. Consensus opinion agrees that they are a fundamental element of a multidisciplinary epilepsy team, working alongside consultants playing a part in the assessment and diagnostic process and alongside counsellors establishing the quality of life impact on the patient as well as giving advice and support.279 Evidence level 2++,2+,4

One study showed that patients seen by an epilepsy nurse specialist were more likely to have discussed general epilepsy topics and less likely to report missing taking their medication.280 Patients and carers are also reported to benefit from nurse specialists who were readily accessible and had time to discuss patients’ problems, and who could act as the patients’ advocates.281 Another study showed that 70% of patients with epilepsy attending clinics run by epilepsy nurse specialists had previously unidentified problems successfully resolved by the nurse including misdiagnosis, overmedication and lack of awareness of drug side effects.282 Evidence level 2++,2+,4

The role of epilepsy nurses generally follows the wider role of the specialist nurse and includes: support and information for the patient, carer and family; provision of up-to-date information and advice; support and information for the multidisciplinary team involved in the patients’ care; education for statutory and voluntary organisations and a source of expert knowledge. More specific roles include adjusting medication, ordering relevant tests, and patient review on return clinic visits.

Just as it is essential to have a clinician who is a specialist in epilepsy leading the epilepsy unit, having epilepsy nurse specialists can enhance the quality of life for patients and seems to give more of a patient-centred approach to their care.

[Contents][Back][Top] [Next]

Scottish Intercollegiate Guidelines Network
Home