UoL_NIHR Seizure management preferences and priorities project
Research type
Research Study
Full title
Developing patient-centred, feasible alternative care for emergency department users with epilepsy. A model for service design.
IRAS ID
253816
Contact name
Adam J. Noble
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
2 years, 3 months, 31 days
Research summary
Summary of Research
Momentum exists for paramedics to access some sort of 'alternative care pathway' (ACP) for people with epilepsy (PWE) seeking emergency care. It could divert many PWE away from ED when they are attended to & facilitate improvements in ambulatory care.To ensure the ACP is acceptable & maximize uptake, it should be informed by the care preferences of the target population. Thus, we shall identify what constitutes an acceptable, but also NHS feasible ACP.
We are here applying for ethical approval for 3 phases of linked research.
Phase 1) A one-day Knowledge Exchange event will be completed with 15 representatives from geographically diverse ambulance and neurology services to determine barriers and facilitators for different ACP possibilities.
Phase 2) A representative sample of 348 PWE(/carers) would be recruited via GPs in NW England; ~50% will have recently visited ED. Discrete choice experiments would identify the relative importance of different service attributes under 3 most common seizure scenarios & the trade-offs people are willing to make. The uptake of different ACP configurations would be estimated & subgroup differences examined.
Phase 3) Two Knowledge Exchange workshops would be held in SE. & NW. England with 30-50 delegates at each. At them, NHS managers, health professionals, commissioners & patient & carer representatives would discuss DCE results & form a consensus on what ACP configuration best meets users’ needs and is likely NHS feasible.
Summary of Results
Ambulances often attend to people with epilepsy. Most are taken to hospital A&E departments. This typically has little benefit since most patients are already diagnosed and visit with non-emergency states.To change things, NHS organisations want an “alternative care pathway” for paramedics to use. It could mean the person is not taken to A&E, but cared for elsewhere. Our project brought stakeholders together to develop an alternative care pathway that includes things important to patients and carers, but is also NHS feasible.
Seventy NHS organisations first told us via survey and a workshop which pathways they were considering and might be feasible.
Thirty people with epilepsy and family members and friends were then interviewed. They explained what is wanted after a seizure and problems with current care. One was going to A&E does not lead to them getting a follow-up appointment with an epilepsy specialist to check their treatment is right.
Using so-called ‘Discrete Choice Experiments’, 430 people with epilepsy who recently contacted the ambulance service and 170 of their family and friends were shown seizure stories. They were asked to make a number of choices to say which pathway they would prefer in these situations.
The results were clear. People wanted care different from what is available. They want a pathway where: paramedics have access to their medical records; an epilepsy specialist is available to advise the paramedic; the GP gets a report; the time it takes to be cared for to be less than 6 hours; they tend to be cared for where they are (not A&E); and; they get a follow-up appointment with an epilepsy specialist.
Three workshops were run with paramedics, epilepsy specialists and managers. They said the alternative care pathway wanted by users was NHS feasible. There is a need to know implement/ evaluate it.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
19/WM/0012
Date of REC Opinion
21 Feb 2019
REC opinion
Further Information Favourable Opinion