Developing feasible person-centred care alternatives to emergency department responses for adults with epilepsy: a discrete choice analysis mixed-methods study.
AMBULANCE
AMBULATORY CARE
CARE PATHWAY
DISCRETE CHOICE
EMERGENCY DEPARTMENT
EPILEPSY
KNOWLEDGE EXCHANGE
Journal
Health and social care delivery research
ISSN: 2755-0079
Titre abrégé: Health Soc Care Deliv Res
Pays: England
ID NLM: 9918470788706676
Informations de publication
Date de publication:
Aug 2024
Aug 2024
Historique:
medline:
1
9
2024
pubmed:
31
8
2024
entrez:
29
8
2024
Statut:
ppublish
Résumé
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. 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 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. The discrete choice experiment sample was broadly representative, but those reporting recent contact with an epilepsy specialist were over-represented. 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. The study is registered as researchregistry4723. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/05/62) and is published in full in Ambulances often attend to people with epilepsy. Most of them are taken to the hospital’s accident and emergency department. This typically has little benefit since most patients are already diagnosed and visit the accident and emergency department with non-emergency states. To change things, National Health Service organisations want an ‘alternative care pathway’ for paramedics to use. It could mean the person is not taken to the accident and emergency department 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 National Health Service-feasible. Seventy National Health Service organisations first told us via a survey and a workshop which pathways they were considering and which might be feasible. Thirty people with epilepsy and their family members and friends were then interviewed. They explained what is wanted after a seizure and problems with current care. One problem was that going to the accident and emergency department does not lead to them getting a follow-up appointment with an epilepsy specialist to check their treatment is right. Using ‘discrete choice experiments’, around 430 people with epilepsy who recently contacted the ambulance service and 170 of their family and friends were asked to make a choice between alternative packages of care, to say which pathway they would prefer in different seizure situations. The results were clear. People wanted care different from what National Health Service organisations told us was available. The choice experiment showed everyone prefers pathways where paramedics have access to their medical records, an epilepsy specialist is available to advise the paramedic, the general practitioner gets a report and they get an appointment with an epilepsy specialist in the future. Everyone wants to avoid long episodes of care (6 hours) and after a typical seizure people with epilepsy want to stay at home. Three workshops were run with paramedics, epilepsy specialists and managers. They said the alternative care pathway wanted by users could be National Health Service-feasible. There is a need to implement and evaluate it now.
Sections du résumé
Background
UNASSIGNED
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.
Objective(s)
UNASSIGNED
(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.
Design
UNASSIGNED
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.
Setting
UNASSIGNED
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.
Participants
UNASSIGNED
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
UNASSIGNED
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.
Limitations
UNASSIGNED
The discrete choice experiment sample was broadly representative, but those reporting recent contact with an epilepsy specialist were over-represented.
Conclusions
UNASSIGNED
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.
Study registration
UNASSIGNED
The study is registered as researchregistry4723.
Funding
UNASSIGNED
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/05/62) and is published in full in
Ambulances often attend to people with epilepsy. Most of them are taken to the hospital’s accident and emergency department. This typically has little benefit since most patients are already diagnosed and visit the accident and emergency department with non-emergency states. To change things, National Health Service organisations want an ‘alternative care pathway’ for paramedics to use. It could mean the person is not taken to the accident and emergency department 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 National Health Service-feasible. Seventy National Health Service organisations first told us via a survey and a workshop which pathways they were considering and which might be feasible. Thirty people with epilepsy and their family members and friends were then interviewed. They explained what is wanted after a seizure and problems with current care. One problem was that going to the accident and emergency department does not lead to them getting a follow-up appointment with an epilepsy specialist to check their treatment is right. Using ‘discrete choice experiments’, around 430 people with epilepsy who recently contacted the ambulance service and 170 of their family and friends were asked to make a choice between alternative packages of care, to say which pathway they would prefer in different seizure situations. The results were clear. People wanted care different from what National Health Service organisations told us was available. The choice experiment showed everyone prefers pathways where paramedics have access to their medical records, an epilepsy specialist is available to advise the paramedic, the general practitioner gets a report and they get an appointment with an epilepsy specialist in the future. Everyone wants to avoid long episodes of care (6 hours) and after a typical seizure people with epilepsy want to stay at home. Three workshops were run with paramedics, epilepsy specialists and managers. They said the alternative care pathway wanted by users could be National Health Service-feasible. There is a need to implement and evaluate it now.
Autres résumés
Type: plain-language-summary
(eng)
Ambulances often attend to people with epilepsy. Most of them are taken to the hospital’s accident and emergency department. This typically has little benefit since most patients are already diagnosed and visit the accident and emergency department with non-emergency states. To change things, National Health Service organisations want an ‘alternative care pathway’ for paramedics to use. It could mean the person is not taken to the accident and emergency department 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 National Health Service-feasible. Seventy National Health Service organisations first told us via a survey and a workshop which pathways they were considering and which might be feasible. Thirty people with epilepsy and their family members and friends were then interviewed. They explained what is wanted after a seizure and problems with current care. One problem was that going to the accident and emergency department does not lead to them getting a follow-up appointment with an epilepsy specialist to check their treatment is right. Using ‘discrete choice experiments’, around 430 people with epilepsy who recently contacted the ambulance service and 170 of their family and friends were asked to make a choice between alternative packages of care, to say which pathway they would prefer in different seizure situations. The results were clear. People wanted care different from what National Health Service organisations told us was available. The choice experiment showed everyone prefers pathways where paramedics have access to their medical records, an epilepsy specialist is available to advise the paramedic, the general practitioner gets a report and they get an appointment with an epilepsy specialist in the future. Everyone wants to avoid long episodes of care (6 hours) and after a typical seizure people with epilepsy want to stay at home. Three workshops were run with paramedics, epilepsy specialists and managers. They said the alternative care pathway wanted by users could be National Health Service-feasible. There is a need to implement and evaluate it now.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1-158Références
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