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Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study

Kerin Bayliss, Lisa Riste, Becky Band Orcid Logo, Sarah Peters, Alison Wearden, Karina Lovell, Louise Fisher, Carolyn A Chew-Graham

BMC Family Practice, Volume: 17, Issue: 1

Swansea University Author: Becky Band Orcid Logo

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DOI (Published version): 10.1186/s12875-016-0453-8

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BackgroundPrevious research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources...

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Published in: BMC Family Practice
ISSN: 1471-2296
Published: Springer Science and Business Media LLC 2016
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URI: https://cronfa.swan.ac.uk/Record/cronfa67042
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Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.MethodsSemi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.ResultsWhen used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.ConclusionWhile barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. 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The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. The authors would like to thank the patient research partners and two patient involvement groups that provided valuable input into the development of the resources and the analysis of the data. 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spelling 2024-09-02T12:23:54.2211474 v2 67042 2024-07-09 Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study 06b53a31f254b004de8649a376ce2fbd 0000-0001-5403-1708 Becky Band Becky Band true false 2024-07-09 HSOC BackgroundPrevious research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.MethodsSemi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.ResultsWhen used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.ConclusionWhile barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management. Journal Article BMC Family Practice 17 1 Springer Science and Business Media LLC 1471-2296 Chronic fatigue syndrome (CFS), Myalgic Encephalomyelitis (ME), Resources, Training, Implementation, Qualitative research, Primary health care 4 6 2016 2016-06-04 10.1186/s12875-016-0453-8 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University This paper outlines independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit Programme (Grant Reference PB-PG-0609-19108). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. The authors would like to thank the patient research partners and two patient involvement groups that provided valuable input into the development of the resources and the analysis of the data. We would also like to thank the practices and patients that gave their time to be involved in this study. 2024-09-02T12:23:54.2211474 2024-07-09T15:26:57.4218456 Faculty of Medicine, Health and Life Sciences School of Psychology Kerin Bayliss 1 Lisa Riste 2 Becky Band 0000-0001-5403-1708 3 Sarah Peters 4 Alison Wearden 5 Karina Lovell 6 Louise Fisher 7 Carolyn A Chew-Graham 8 67042__31213__df6b0c08f59c481da60540c5cc1f17cb.pdf 67042.VoR.pdf 2024-09-02T12:21:21.1386286 Output 491203 application/pdf Version of Record true © 2016 Bayliss et al. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License. true eng http://creativecommons.org/licenses/by/4.0/
title Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
spellingShingle Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
Becky Band
title_short Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
title_full Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
title_fullStr Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
title_full_unstemmed Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
title_sort Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study
author_id_str_mv 06b53a31f254b004de8649a376ce2fbd
author_id_fullname_str_mv 06b53a31f254b004de8649a376ce2fbd_***_Becky Band
author Becky Band
author2 Kerin Bayliss
Lisa Riste
Becky Band
Sarah Peters
Alison Wearden
Karina Lovell
Louise Fisher
Carolyn A Chew-Graham
format Journal article
container_title BMC Family Practice
container_volume 17
container_issue 1
publishDate 2016
institution Swansea University
issn 1471-2296
doi_str_mv 10.1186/s12875-016-0453-8
publisher Springer Science and Business Media LLC
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Psychology{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Psychology
document_store_str 1
active_str 0
description BackgroundPrevious research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.MethodsSemi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.ResultsWhen used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.ConclusionWhile barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management.
published_date 2016-06-04T08:26:48Z
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