Authors' objectives: Calls have been made for paramedics to have some form of care pathway that they could use to safely divert adults with epilepsy away from emergency departments and instigate ambulatory care improvements. Different configurations are possible. To know which to prioritise for implementation/evaluation, there is a need to determine which are acceptable to service users and likely National Health Service-feasible. (1) Identify configurations being considered, (2) understand service users’ views of them and current provision, (3) identify what sort of care service users want and (4) determine which configuration(s) is considered to achieve optimal balance in meeting users’ preference and being National Health Service-feasible. Emergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An alternative care pathway (CP), which diverts people with epilepsy (PWE) away from ED when ‘999’ is called and leads to care elsewhere, could potentially generate savings and instigate improvements in the person’s ambulatory care. This project sought to identify the optimal configuration, ensuring the CP is both acceptable to service users and NHS-feasible. A key method used was discrete choice experiments (DCEs). They involved users being presented with hypothetical seizure scenarios and making a number of choices to say which CP configuration, described according to a fixed set of characteristics (attributes), they would prefer. The project’s aims were as follows.

Authors' results and conclusions: The survey identified a range of pathway configurations. They differed in where they would take the patient and their potential to instigate ambulatory care improvements. Users had been rarely consulted in designing them. The discrete choice experiments found that users want a configuration of care markedly different to that offered. Across the seizure scenarios, users wanted their paramedic to have access to their medical records; for an epilepsy specialist (e.g. an epilepsy nurse, neurologist) to be available to advise; for their general practitioner to receive a report; for the incident to generate an appointment with an epilepsy specialist; for the care episode to last < 6 hours; and there was a pattern of preference to avoid conveyance to emergency departments and stay where they were. Stakeholders judged this configuration to be National Health Service-feasible within 5–10 years, with some elements being immediately deployable. Users state they want a configuration of care that is markedly different to current provision. The configuration they prefer was, with support and investment, judged to likely be National Health Service-feasible. The preferred configuration should now be developed and evaluated to determine its actual deliverability and efficacy. Work Package 1 Work Package 1a. Survey of service providers Clinical leads and managers from 72 (82.8%) of the invited services responded. Sixty per cent were considering or using an alternative CP change; only 21.2% had consulted service users on it. A range of CP configurations were reported. Some involved caring for PWE at home, ‘on scene’ or in some instances conveying them to an urgent treatment centre. The potential of configurations to improve ambulatory care varied. By working collaboratively with service users from the target population, clinicians and commissioners, this project has provided clear answers to a pressing service delivery question. It provides evidence indicating that for common seizure scenarios, users appear open to paramedics not conveying them to ED and how poorly current care aligns with their preferences. Our project has also shown what postseizure care service users appear to want and that limited differences exist for different seizure scenarios. This appears to support the deployment of a single CP configuration. The study also provided evidence on the estimated improvement in utility that would result from individual attribute changes. This could be used to prioritise CP changes. Importantly, service providers and commissioners were found to be of the view that the CP configuration favoured by users could be NHS-feasible within 5–10 years, and they identified which attribute levels require the most work. It is important to now take the evidence this project has captured on people’s stated preferences and views and seek to implement one of the possible 18 CP configurations and evaluate it to determine its actual feasibility and efficacy in practice.

Authors' recommendations: Using the attribute levels specified by stakeholders as representing the optimum, one of the possible 18 CP configurations should be evaluated for its efficacy. Any evaluation should consider short- (e.g. rates of recontact, death) and long-term outcomes (e.g. proportion of PWE ‘unknown’ to specialists brought to their attention). A cluster-randomised controlled trial would likely provide the most rigorous evidence. However, an alternative, faster evaluation approach may be needed to ensure evidence is generated in an acceptable time frame. Other ways to reduce unnecessary ED attendance warrant research attention. One is how to address ambulance crews’ requests for support in identifying persons suitable for non-conveyance. Attention is also needed on users’ seizure first aid confidence and knowledge.

Authors' methods: Service providers were surveyed to address objective 1. Interviews with service users addressed objective 2. Objective 3 was addressed by completing discrete choice experiments. These determined users’ care preferences for different seizure scenarios. Objective 4 was addressed by completing ‘knowledge exchange’ workshops. At these, stakeholders considered the findings on users’ stated preferences and judged different pathway configurations against Michie’s ‘acceptability, practicability, effectiveness, affordability, side-effects and equity’ feasibility criteria. This project took place in England. The survey recruited representatives from neurology and neuroscience centres and from urgent and emergency care providers. For the interviews, recruitment occurred via third-sector support groups. Recruitment for discrete choice experiments occurred via the North West Ambulance Service NHS Trust and public advert. Workshop participants were recruited from neurology and neuroscience centres, urgent and emergency care providers, support groups and commissioning networks. Seventy-two services completed the survey. Interviews were conducted with 25 adults with epilepsy (and 5 relatives) who had emergency service contact in the prior 12 months. Discrete choice experiments were completed by 427 adults with epilepsy (and 167 relatives) who had ambulance service contact in the prior 12 months. Workshops were completed with 27 stakeholders. The discrete choice experiment sample was broadly representative, but those reporting recent contact with an epilepsy specialist were over-represented. Work Package 1 Work Package 1a. Survey of service providers England’s ambulance services, epilepsy services and a random sample of its EDs were surveyed (April–June 2019). They were asked what alternative CPs they were considering and the extent to which they had consulted users.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/17/05/62

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/HKQW4129

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/HKQW4129

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk