Title: ‘Seizure first Aid training For Epilepsy’ (SAFE) for people with epilepsy who attend emergency departments, and their family and friends: intervention development and pilot
Funder: Department of Health and Social Care

Abstract: BACKGROUND: Epilepsy, the most common serious neurological condition in the UK, has been identified by NHS policy as an important cause of unnecessary emergency hospital use. One fifth of people with epilepsy (PWE) visit a hospital emergency department (ED) each year, with half resulting in admission. It is also the most common neurological reason for readmission; ~60% of PWE who attend ED re-attend within 12 months. ED use for epilepsy is often clinically unnecessary, with most (>80%) of those visiting EDs having established epilepsy and having had an uncomplicated seizure. Converging evidence, including from a previously funded HS&DR project and our National Audit of Seizure Management in Hospitals, indicates that a key reason why patients attend is because they and their informal carers can lack confidence managing seizures, are unsure as to what the effects of seizures are, do not know when medical attention is required, and are frequently fearful of death from seizures. AIMS: Part of A of the present project will develop a learning programme called ‘Seizure first Aid training For Epilepsy’ for adults with diagnosed epilepsy who attend ED and for their carer/s. Part B of the project will assess the feasibility and optimum design of a future RCT to test the course's effectiveness. DESIGN: Part A - The Epilepsy Society (ES) offer a course on seizure management which persons from various backgrounds pay to attend. With the ES, we will adapt it to ED attendees' needs and develop 'Seizure first Aid training For Epilepsy'. Experts from professional groups will review the course and be interviewed about changes needed to ensure content accuracy and suitability. Two 'Seizure first Aid training For Epilepsy' courses will then be delivered to patient and carer user group members who have used ED for epilepsy. They will, via group and individual interviews, feedback on the course and identify required changes. Part B - Pilot, single-blind RCT of 'Seizure first Aid training For Epilepsy'(+treatment as usual, TAU) vs. TAU alone in North West England. After the pilot, we will offer the 'Seizure first Aid training For Epilepsy' to TAU participants. POPULATION: Part A - Representatives from 7 professional groups (including neurology, nursing & ED) have agreed to review the course. The Mersey Region Epilepsy Assoc. and ES have agreed to recruit 20 PWE aged 16+ and one of their carers to attend the 2 development courses. Part B - 3 Merseyside EDs have agreed to help identify 80 PWE prescribed anti-epileptic drugs, who have visited on 2+ occasions for epilepsy in the prior 12 month (the 60% who visit ED the most) and who are able to provide informed consent and complete questionnaires in English. Eligible patients will, using opt-out procedures, be invited to participate with a carer. Participants will provide consent and be assessed in the community. Based on prior trials, we estimate 20% will agree to participate. INTERVENTION: Parts A & B - The 'Seizure first Aid training For Epilepsy' course will be based on the ES’s course. This ½-day interactive learning programme (facilitated by a trained health professional) is delivered to small groups. Standardised materials aim to increase participants’ confidence in managing seizures. ES trainers will deliver 'Seizure first Aid training For Epilepsy' within participants’ locality to groups of ~10 patient-carer dyads. MEASURES: Part B - Hospital records and self-report questionnaires will be used to measure outcomes at baseline, 3-, 6- and 12ms post-recruitment. The proposed primary outcome is epilepsy ED use over 12m follow-up. Secondary outcomes are quality of life, distress, stigma and carer-burden, patient carer confidence managing seizures, epilepsy/seizure first aid knowledge, adverse events and fear of seizures. We will also analyse the cost of implementing the 'Seizure first Aid training For Epilepsy' programme. SAMPLE SIZE: Part B- 30 patients in each arm will provide sufficiently precise estimates of likely recruitment, retention and of the dispersion of the outcome to inform power calculations for a definitive RCT. Prior trials have lost ~25% of participants at 12ms. We will recruit 40 patients in each arm to allow for possible discontinuation.

Lay abstract: #NAME?

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL