Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis

Background: In the UK, epilepsy care involves both specialists (for example, neurologists) and generalists (for example, GPs). Policymakers typically consider that epilepsy care should be integrated and involve both specialists and generalists. However, few understand exactly how patients view and...

Full description

Saved in:
Bibliographic Details
Main Authors: Charlotte L Cotterill, Andrew Booth, Jon M Dickson, Daniel Hind
Format: Article
Language:English
Published: Royal College of General Practitioners 2024-12-01
Series:BJGP Open
Subjects:
Online Access:https://bjgpopen.org/content/8/4/BJGPO.2024.0072
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850102010887536640
author Charlotte L Cotterill
Andrew Booth
Jon M Dickson
Daniel Hind
author_facet Charlotte L Cotterill
Andrew Booth
Jon M Dickson
Daniel Hind
author_sort Charlotte L Cotterill
collection DOAJ
description Background: In the UK, epilepsy care involves both specialists (for example, neurologists) and generalists (for example, GPs). Policymakers typically consider that epilepsy care should be integrated and involve both specialists and generalists. However, few understand exactly how patients view and compare specialist and generalist care. Aim: To explore patient perspectives of specialist care and generalist care for epilepsy in a qualitative evidence synthesis. Design & setting: A systematic review of patient perspectives of epilepsy care. A qualitative evidence synthesis was conducted using an identified framework. Method: Systematic searches in five databases retrieved 17 eligible studies. Data were extracted and synthesised using framework analysis informed by the ‘United Model of Generalism’. Results: The following three themes were developed: ‘Epilepsy care can be burdensome’ (for example, through care fragmentation); ‘Patients' experiences of care is that care is not always accessible’ (for example, lack of a continuum between standardised and interpretive care); and ‘How care could change for people with epilepsy’ (for example, clinicians currently have insufficient time to deviate from protocol-driven care to address psychosocial needs). People with epilepsy frequently observe that generalists lack expertise in epilepsy management. Conclusion: This synthesis of patient experiences indicates recommendations should focus on improving communication and integration between specialists and generalists for epilepsy care. Patient experiences indicate specialist care risks being burdensome and generalist knowledge insufficient, requiring enhanced primary care clinician skills and improved awareness of patient psychosocial needs. The findings argue in favour of healthcare policies, materials, and tools to continually support patient perspectives in developing epilepsy services.
format Article
id doaj-art-1801292ebbfc439ab0f2ee12c5f3a990
institution DOAJ
issn 2398-3795
language English
publishDate 2024-12-01
publisher Royal College of General Practitioners
record_format Article
series BJGP Open
spelling doaj-art-1801292ebbfc439ab0f2ee12c5f3a9902025-08-20T02:39:51ZengRoyal College of General PractitionersBJGP Open2398-37952024-12-018410.3399/BJGPO.2024.0072Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesisCharlotte L Cotterill0https://orcid.org/0000-0003-2019-8168Andrew Booth1https://orcid.org/0000-0003-4808-3880Jon M Dickson2https://orcid.org/0000-0002-1361-2714Daniel Hind3The University of Sheffield, Population Health, School of Medicine and Population Health, Sheffield, United KingdomThe University of Sheffield, Population Health, School of Medicine and Population Health, Sheffield, United KingdomThe University of Sheffield, Population Health, School of Medicine and Population Health, Sheffield, United KingdomThe University of Sheffield, Population Health, School of Medicine and Population Health, Sheffield, United KingdomBackground: In the UK, epilepsy care involves both specialists (for example, neurologists) and generalists (for example, GPs). Policymakers typically consider that epilepsy care should be integrated and involve both specialists and generalists. However, few understand exactly how patients view and compare specialist and generalist care. Aim: To explore patient perspectives of specialist care and generalist care for epilepsy in a qualitative evidence synthesis. Design & setting: A systematic review of patient perspectives of epilepsy care. A qualitative evidence synthesis was conducted using an identified framework. Method: Systematic searches in five databases retrieved 17 eligible studies. Data were extracted and synthesised using framework analysis informed by the ‘United Model of Generalism’. Results: The following three themes were developed: ‘Epilepsy care can be burdensome’ (for example, through care fragmentation); ‘Patients' experiences of care is that care is not always accessible’ (for example, lack of a continuum between standardised and interpretive care); and ‘How care could change for people with epilepsy’ (for example, clinicians currently have insufficient time to deviate from protocol-driven care to address psychosocial needs). People with epilepsy frequently observe that generalists lack expertise in epilepsy management. Conclusion: This synthesis of patient experiences indicates recommendations should focus on improving communication and integration between specialists and generalists for epilepsy care. Patient experiences indicate specialist care risks being burdensome and generalist knowledge insufficient, requiring enhanced primary care clinician skills and improved awareness of patient psychosocial needs. The findings argue in favour of healthcare policies, materials, and tools to continually support patient perspectives in developing epilepsy services.https://bjgpopen.org/content/8/4/BJGPO.2024.0072systematic reviewsepilepsypatient perspectivesgeneral practitionersqualitative research
spellingShingle Charlotte L Cotterill
Andrew Booth
Jon M Dickson
Daniel Hind
Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
BJGP Open
systematic reviews
epilepsy
patient perspectives
general practitioners
qualitative research
title Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
title_full Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
title_fullStr Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
title_full_unstemmed Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
title_short Patients’ perspectives of epilepsy care by specialists and generalists: qualitative evidence synthesis
title_sort patients perspectives of epilepsy care by specialists and generalists qualitative evidence synthesis
topic systematic reviews
epilepsy
patient perspectives
general practitioners
qualitative research
url https://bjgpopen.org/content/8/4/BJGPO.2024.0072
work_keys_str_mv AT charlottelcotterill patientsperspectivesofepilepsycarebyspecialistsandgeneralistsqualitativeevidencesynthesis
AT andrewbooth patientsperspectivesofepilepsycarebyspecialistsandgeneralistsqualitativeevidencesynthesis
AT jonmdickson patientsperspectivesofepilepsycarebyspecialistsandgeneralistsqualitativeevidencesynthesis
AT danielhind patientsperspectivesofepilepsycarebyspecialistsandgeneralistsqualitativeevidencesynthesis