In this series featuring information for patients and professionals taken from SIGN’s evidence-based guidelines, we reproduce the ‘information for discussion with patients and carers’ section from SIGN guideline number 70, on diagnosis and management of epilepsy in adults.

This section of the guideline is intended to highlight the main issues that healthcare professionals should discuss with patients and carers. It is based on the best available evidence of what is effective.

People with epilepsy and carers have a need for clear, accurate and appropriate information and advice. Surveys have reported that up to 90% of patients want more information and felt that they had received little advice about the cause of epilepsy, effects and interactions of drugs and the avoidance of potentially dangerous situations.

Conversely, it is known that patients can forget or fail to take in much of what they are told during clinic visits so written information, helpline telephone numbers and contact details of voluntary organisations should be given to all patients.

Almost as important as the quality of information is the manner in which it is given. Many patients prefer talking to an epilepsy nurse or someone from a voluntary organisation with whom they feel more at ease. Some information may have to be repeated on different occasions to ensure understanding. A general information leaflet should be given to all patients at the time of diagnosis. Checklists and tests of epilepsy knowledge are available from support organisations.

Example information checklist
Example checklist can be used by healthcare professionals to identify what information to give patients and carers

General epilepsy information
Explanation of what epilepsy is*
Probable cause
Explanation of investigative procedures
Classification of seizures*
Syndrome
Epidemiology
Prognosis*
Genetics
Sudden Unexpected Death in Epilepsy (SUDEP)*

Issues for women
Contraception*
Pre-conception*
Pregnancy and breastfeeding*
Menopause
Antiepileptic drugs
Choice of drug*
Efficacy*
Side-effects*
Adherence*
Drug interactions*
Free prescriptions*
Lifestyle
Driving regulations*
Employment
Education (e.g. ES guidelines for teachers)
Leisure
Relationships
Safety in the home*
Seizure triggers
Lack of sleep*
Alcohol and recreational drugs*
Stress*
Photosensitivity
Possible psychosocial consequences
Perceived stigma*
Memory loss*
Depression
Anxiety
Maintaining mental well-being
Self-esteem*
Sexual difficulties
First Aid
General guidelines*
Status epilepticus
Support organisations
Addresses and telephone numbers of national and local epilepsy organisations (see Box)*
Format
Appropriate language
Appropriate size
Appropriate level of comprehension
Appropriate format
* Items marked with an asterisk are considered essential information. The other material should be given when it is relevant. Patient information is readily available from the websites listed in the Box (below).

A recent study concluded that information for patients should be suited to their understanding, making adjustments for different socio-cultural contexts. It should be noted that children are frequently carers of a parent with epilepsy, and need to be given proper support. Patients with epilepsy place great importance on having a doctor who is approachable, communicative and knowledgeable and on receiving adequate information on their condition.

Guidelines for teachers have been produced by Epilepsy Scotland. A recent survey found that there had been little improvement in information provision despite the problem having been highlighted previously. It was concluded that reducing the information deficit would significantly reduce the morbidity associated with epilepsy.

  • Information should be given in an appropriate manner with sufficient time to answer questions. The type of information given should be recorded in the patient notes.
  • Information should be repeated over time and reinforced to ensure understanding.
  • Patients should be given information to take home in the most suitable format e.g. leaflets, factsheets, video or specialised material for people with learning disability, making adjustments for different socio-cultural contexts.
  • A checklist should be used to help healthcare professionals to give patients and carers the information they need in an appropriate format.
Useful contact details
The National Society for Epilepsy
Chesham Lane, Chalfont St Peter, Bucks SL9 0RJ Helpline: 01494 601400; tel: 01494 601300; fax: 01494 871927; website: www.epilepsynse.org.uk
Epilepsy Bereaved (for the relatives of people who have died from epilepsy)
PO Box 112, Wantage, Oxon OX12 8XT Bereavement Support Contact Line - 24 hour answering service: 01235 772852; tel: 01235 772850; website: ds.dial.pipex.com/epilepsybereaved
Epilepsy Action
New Anstey House, Gate Way Drive,Yeadon, Leeds LS19 7XY Helpline: 0808 800 5050; free fax: 0808 800 5555; email: helpline@epilepsy.org.uk; website: www.epilepsy.org.uk
Joint Epilepsy Council of the UK and Ireland
Tel: 01943 871 852; website: www.jointepilepsycouncil.org.uk
Epilepsy Pregnancy Register
Tel: 0800 3891248
NHSDirect
Tel: 0845 4647; website: www.nhsdirect.nhs.uk

NHS 24 (in Scotland)
Tel: 08454 24 24 24; website: www.nhs24.com

Adapted from: SIGN 70. Diagnosis and Management of Epilepsy in Adults – A national clinical guideline. Edinburgh: Scottish Intercollegiate Guidelines Network, April 2003

Reproduced with permission from SIGN 70: Diagnosis and Management of Epilepsy in Adults – A national clinical guideline. Scottish Intercollegiate Guidelines Network, April 2003.

Guidelines in Practice, July 2003, Volume 6(7)
© 2003 MGP Ltd
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