Developing an alternative care pathway for emergency ambulance responses for adults with epilepsy: A Discrete Choice Experiment to understand which configuration service users prefer. Part of the COLLABORATE project

Emily Holmes; Pete Dixon; Amy Mathieson; Leone Ridsdale; Myfanwy Morgan; Alison McKinlay; Jon Dickson; Steve Goodacre; Mike Jackson; Deborah Foster; Kristy Hardman; Steve Bell; Anthony Marson; Dyfrig Hughes; Adam J Noble

doi:10.1016/j.seizure.2024.04.008

Developing an alternative care pathway for emergency ambulance responses for adults with epilepsy: A Discrete Choice Experiment to understand which configuration service users prefer. Part of the COLLABORATE project

Seizure. 2024 Apr 10:118:28-37. doi: 10.1016/j.seizure.2024.04.008. Online ahead of print.

Authors

Emily Holmes¹, Pete Dixon², Amy Mathieson³, Leone Ridsdale⁴, Myfanwy Morgan⁵, Alison McKinlay⁶, Jon Dickson⁷, Steve Goodacre⁸, Mike Jackson⁹, Deborah Foster⁹, Kristy Hardman⁹, Steve Bell⁹, Anthony Marson¹⁰, Dyfrig Hughes¹, Adam J Noble¹¹

Affiliations

¹ Centre for Health Economics & Medicines Evaluation, North Wales Medical School, Bangor University, UK; Department of Pharmacology and Therapeutics, University of Liverpool, UK.
² Department of Public Health, Policy and Systems, University of Liverpool, Liverpool, UK.
³ Department of Public Health, Policy and Systems, University of Liverpool, Liverpool, UK; Centre for Primary Care and Health Services Research, University of Manchester, UK.
⁴ Department of Basic and Clinical Neuroscience, King's College London, London, UK.
⁵ Institute of Pharmaceutical Science, King's College London, UK.
⁶ Department of Basic and Clinical Neuroscience, King's College London, London, UK; Centre for Behaviour Change, Research Department of Clinical, Educational and Health Psychology, University College London, UK.
⁷ Academic Unit of Primary Medical Care, University of Sheffield, UK.
⁸ School of Health and Related Research, University of Sheffield, UK.
⁹ North West Ambulance Service NHS Trust, Bolton, UK.
¹⁰ Department of Pharmacology and Therapeutics, University of Liverpool, UK.
¹¹ Department of Public Health, Policy and Systems, University of Liverpool, Liverpool, UK. Electronic address: adam.noble@liv.ac.uk.

PMID: 38615478
DOI: 10.1016/j.seizure.2024.04.008

Abstract

Introduction: To identify service users' preferences for an alternative care pathway for adults with epilepsy presenting to the ambulance service.

Methods: Extensive formative work (qualitative, survey and knowledge exchange) informed the design of a stated preference discrete choice experiment (DCE). This hypothetical survey was hosted online and consisted of 12 binary choices of alternative care pathways described in terms of: the paramedic's access to medical records/ 'care plan', what happens next (described in terms of conveyance), time, availability of epilepsy specialists today, general practitioner (GP) notification and future contact with epilepsy specialists. DCE scenarios were described as: (i) typical seizure at home. (ii) typical seizure in public, (iii) atypical seizure. Respondents were recruited by a regional English ambulance service and by national public adverts. Participants were randomised to complete 2 of the 3 DCEs.

Results: People with epilepsy (PWE; n = 427) and friends/family (n = 167) who completed the survey were representative of the target population. PWE preferred paramedics to have access to medical records, non-conveyance, to avoid lengthy episodes of care, availability of epilepsy specialists today, GP notification, and contact with epilepsy specialists within 2-3 weeks. Significant others (close family members or friends) preferred PWE experiencing an atypical seizure to be conveyed to an Urgent Treatment Centre and preferred shorter times. Optimal configuration of services from service users' perspective far out ranked current practice (rank 230/288 possible configurations).

Discussion: Preferences differ to current practice but have minimal variation by seizure type or stakeholder. Further work on feasibility of these pathways in England, and potentially beyond, is required.

Keywords: Ambulance; Care pathway; Discrete choice experiment; Epilepsy; Preference; Seizure.