The Collaborate project: Developing feasible person-centred care alternatives to emergency department responses for adults with epilepsy: a discrete choice analysis mixed methods study

Noble, Adam ORCID: https://orcid.org/0000-0002-8070-4352 (2023) The Collaborate project: Developing feasible person-centred care alternatives to emergency department responses for adults with epilepsy: a discrete choice analysis mixed methods study. [Data Collection]

Data Catalogue DOI: 10.17638/datacat.liverpool.ac.uk/2527

Description

This is a multicomponent project. The data set includes data from most of its components (namely, survey of service providers, Discrete Choice Experiments; and ‘Knowledge Exchange’ workshops). The remainder (interviews with service users) is archived by a subcontractor who has ownership of it. Any use of data files is subject to permission from the lead author and must be acknowledged. It should not be used within explicit written permission. For context, the project abstract is as follows: Background: 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 NHS feasible. Objective(s): 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 NHS feasible. Design: 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 ‘APEASE’ feasibility criteria. Setting: 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 the Discrete Choice Experiments occurred via the North-West ambulance service and public advert. Workshop participants were recruited from neurology and neuroscience centres, urgent and emergency care providers, support groups and commissioning networks. Participants: 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. Results: 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 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 GP to receive a report; for the incident to generate an appointment with an epilepsy specialist; for the care episode to last less than 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 NHS feasible within 5-10 years, with some elements being immediately deployable. Limitations: The Discrete Choice Experiment sample was broadly representative, but those reporting recent contact with an epilepsy specialist were over-represented . Conclusions: 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 NHS feasible.

Keywords:

Ambulance, Epilepsy, Emergency Department, Discrete Choice, Knowledge Exchange, Care Pathway, Ambulatory Care.

Divisions:

Faculty of Health and Life Sciences > Institute of Population Health > Public Health, Policy and Systems

Depositing User:

Adam Noble

Date Deposited:

17 Jul 2024 15:24

Last Modified:

17 Jul 2024 15:24

DOI:

10.17638/datacat.liverpool.ac.uk/2527