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Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)

Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)...

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Autores principales: Cullinan, John, Pheby, Derek F. H., Araja, Diana, Berkis, Uldis, Brenna, Elenka, de Korwin, Jean-Dominique, Gitto, Lara, Hughes, Dyfrig A., Hunter, Rachael M., Trepel, Dominic, Wang-Steverding, Xia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7996783/
https://www.ncbi.nlm.nih.gov/pubmed/33652747
http://dx.doi.org/10.3390/medicina57030208
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author Cullinan, John
Pheby, Derek F. H.
Araja, Diana
Berkis, Uldis
Brenna, Elenka
de Korwin, Jean-Dominique
Gitto, Lara
Hughes, Dyfrig A.
Hunter, Rachael M.
Trepel, Dominic
Wang-Steverding, Xia
author_facet Cullinan, John
Pheby, Derek F. H.
Araja, Diana
Berkis, Uldis
Brenna, Elenka
de Korwin, Jean-Dominique
Gitto, Lara
Hughes, Dyfrig A.
Hunter, Rachael M.
Trepel, Dominic
Wang-Steverding, Xia
author_sort Cullinan, John
collection PubMed
description Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved. Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis. Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels. Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages.
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spelling pubmed-79967832021-03-27 Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE) Cullinan, John Pheby, Derek F. H. Araja, Diana Berkis, Uldis Brenna, Elenka de Korwin, Jean-Dominique Gitto, Lara Hughes, Dyfrig A. Hunter, Rachael M. Trepel, Dominic Wang-Steverding, Xia Medicina (Kaunas) Article Background and Objectives: We have conducted a survey of academic and clinical experts who are participants in the European ME/CFS Research Network (EUROMENE) to elicit perceptions of general practitioner (GP) knowledge and understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and suggestions as to how this could be improved. Materials and Methods: A questionnaire was sent to all national representatives and members of the EUROMENE Core Group and Management Committee. Survey responses were collated and then summarized based on the numbers and percentages of respondents selecting each response option, while weighted average responses were calculated for questions with numerical value response options. Free text responses were analysed using thematic analysis. Results: Overall there were 23 responses to the survey from participants across 19 different European countries, with a 95% country-level response rate. Serious concerns were expressed about GPs’ knowledge and understanding of ME/CFS, and, it was felt, about 60% of patients with ME/CFS went undiagnosed as a result. The vast majority of GPs were perceived to lack confidence in either diagnosing or managing the condition. Disbelief, and misleading illness attributions, were perceived to be widespread, and the unavailability of specialist centres to which GPs could refer patients and seek advice and support was frequently commented upon. There was widespread support for more training on ME/CFS at both undergraduate and postgraduate levels. Conclusion: The results of this survey are consistent with the existing scientific literature. ME/CFS experts report that lack of knowledge and understanding of ME/CFS among GPs is a major cause of missed and delayed diagnoses, which renders problematic attempts to determine the incidence and prevalence of the disease, and to measure its economic impact. It also contributes to the burden of disease through mismanagement in its early stages. MDPI 2021-02-26 /pmc/articles/PMC7996783/ /pubmed/33652747 http://dx.doi.org/10.3390/medicina57030208 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ).
spellingShingle Article
Cullinan, John
Pheby, Derek F. H.
Araja, Diana
Berkis, Uldis
Brenna, Elenka
de Korwin, Jean-Dominique
Gitto, Lara
Hughes, Dyfrig A.
Hunter, Rachael M.
Trepel, Dominic
Wang-Steverding, Xia
Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title_full Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title_fullStr Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title_full_unstemmed Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title_short Perceptions of European ME/CFS Experts Concerning Knowledge and Understanding of ME/CFS among Primary Care Physicians in Europe: A Report from the European ME/CFS Research Network (EUROMENE)
title_sort perceptions of european me/cfs experts concerning knowledge and understanding of me/cfs among primary care physicians in europe: a report from the european me/cfs research network (euromene)
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7996783/
https://www.ncbi.nlm.nih.gov/pubmed/33652747
http://dx.doi.org/10.3390/medicina57030208
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