Myalgic encephalomyelitis/chronic fatigue Syndrome (ME/CFS) : Investigating care practices pointed out to disparities in diagnosis and treatment across European Union
Strand, Elin B. (Oslo University Hospital HF. CFS/ME Centre. Norwegian National Advisory Unit on CFS/ME)
Nacul, Luis (Faculty of Infectious and Tropical Diseases. London School of Hygiene and Tropical Medicine)
Mengshoel, Anne Marit (University of Oslo)
Helland, Ingrid B. (Oslo University Hospital (Oslo, Noruega))
Grabowski, Patricia (Charité - Universitätsmedizin Berlin)
Krumina, Angelika (Riga Stradins University)
Alegre Martín, José (Hospital Universitari Vall d'Hebron. Institut de Recerca)
Efrim-Budisteanu, Magdalena (Research Psychiatry Laboratory. "Alexandru Obregia" Clinical Hospital of Psychiatry)
Sekulic, Slobodan (Medical Faculty Novi Sad)
Pheby, Derek (University College London. Rayne Institute)
Sakkas, Giorgos K. (Live Laboratory. School of PE and Sport Sciences. University of Thessaly)
Adella Sirbu, Carmen (Central Military Emergency Hospital. Carol Davila)
Authier, François Jérôme (Lorraine University. Nancy University hospital. CHU de Nancy. Hôpitaux de Brabois)
Murovska, Modra (Riga Stradins University)
Lacerda, Eliana (Faculty of Infectious and Tropical Diseases. London School of Hygiene and Tropical Medicine)
Estevez Lopez, Fernando (CVS/ME Medisch Centrum)
Scheibenbogen, C. (University Hospital Erlangen (Alemanya))
Shi-Kova-Lekova, E. (National Center of Infectious and Parasitic Diseases)
Lorusso, Lorenzo (University of Pavia)
Berkis, U. (Riga Stradins University)
Westermeier, F. (FH Joanneum)
Riederer, M. (FH Joanneum)
Tobback, E. (Universitair Ziekenhuis Gent)
Meeus, Mira (Universiteit Antwerpen. Campus Drie Eiken)
Shikova-Lekova, E.
Nielsen, H. (PrivatHospitalet Danmark)
Brandslund, I. (Lillebaelt Hospital)
Polo, O. (Unesta Research Center)
De Korwin, J. D. (Lorraine University. Nancy University hospital. CHU de Nancy. Hôpitaux de Brabois)
Scheibenbogen, C. (University Hospital Erlangen (Alemanya))
Harrer, T. (University Hospital Erlangen (Alemanya))
Prusty, B. (Julius Maximilian University of Wuerzburg. Department of Microbiology. University of Wuerzburg Biozentrum)
Freitag, H. (Charité - Universitätsmedizin Berlin)
Trepel, D. (Trinity College Dublin. Trinity College. Office 0.81. Lloyd Building)
Cullinan, John (NUI Galway Discipline of Economics. NUI Galway)
Lorusso, Lorenzo (University of Pavia)
Capelli, Enrica (University of Pavia)
Nora-Krukle, Z. (Charité - Universitätsmedizin Berlin)
Rasa, S. (Charité - Universitätsmedizin Berlin)
Vermeulen, R. (CVS/ME Medisch Centrum)
Menhshoel, A. M. (University of Oslo)
Helland, I. B. (Oslo University Hospital (Oslo, Noruega))
Zalewski, Paweł (Nicolaus Copernicus University in Torun Collegium Medicum)
Sepulveda, N. (Centre of Statistics and Application. University of Lisbon. Faculdade de Ciencias)
Sirbu, C. A. (Central Military Emergency Hospital. Carol Davila)
Sekulic, Slobodan (Medical Faculty Novi Sad)
Vukadinovic, M. (Novi Sad Business School)
Marusic, U. (Science and research centre Koper)
Pisot, R.
Castro-Marrero, Jesús. (Hospital Universitari Vall d'Hebron. Institut de Recerca)
Blanco, Julià (Institut Germans Trias i Pujol. Hospital Universitari Germans Trias i Pujol)
Oltra, E. (Universidad Católica de Valencia)
Miro, J. (Universitat Rovira i Virgili. Departament de Psicologia)
Berquist, J. (Uppsala University Analytical Chemistry)
Blomberg, J. (Uppsala University. Medical Sciences. Academic Hospital)
Pheby, D. (University College London. Rayne Institute)
Edwards, J. (University College London. Rayne Institute)
Wang, X. (School of Pharmacy. Norwich Medical School. Faculty of Medicine and Health Sciences. University of East Anglia)
Universitat Autònoma de Barcelona

Date:	2019
Abstract:	ME/CFS is a chronic, complex, multisystem disease that often limits the health and functioning of the affected patients. Diagnosing patients with ME/CFS is a challenge, and many different case definitions exist and are used in clinical practice and research. Even after diagnosis, medical treatment is very challenging. Symptom relief and coping may affect how patients live with their disease and their quality of life. There is no consensus on which diagnostic criteria should be used and which treatment strategies can be recommended for patients. The purpose of the current project was to map the landscape of the Euromene countries in respect of national guidelines and recommendations for case definition, diagnosis and clinical approaches for ME/CFS patients. A 23 items questionnaire was sent out by email to the members of Euromene. The form contained questions on existing guidelines for case definitions, treatment/management of the disease, tests and questionnaires applied, and the prioritization of information for data sampling in research. We obtained information from 17 countries. Five countries reported having national guidelines for diagnosis, and five countries reported having guidelines for clinical approaches. For diagnostic purposes, the Fukuda criteria were most often recommended, and also the Canadian Consensus criteria, the International Consensus Criteria and the Oxford criteria were used. A mix of diagnostic criteria was applied within those countries having no guidelines. Many different questionnaires and tests were used for symptom registration and diagnostic investigation. For symptom relief, pain and anti-depressive medication were most often recommended. Cognitive Behavioral Therapy and Graded Exercise treatment were often recommended as disease management and rehabilitative/palliative strategies. The lack of consistency in recommendations across European countries urges the development of regulations, guidance and standards. The results of this study will contribute to the harmonization of diagnostic criteria and treatment for ME/CFS in Europe.
Rights:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Language:	Anglès
Document:	Article ; recerca ; Versió publicada
Subject:	Delivery of Health Care ; Disease Management ; European Union ; Fatigue Syndrome, Chronic ; Female ; Healthcare Disparities ; Humans ; Male ; Practice Guidelines as Topic ; Practice Patterns, Physicians' ; Public Health Surveillance ; Surveys and Questionnaires
Published in:	PloS one, Vol. 14 Núm. 12 (january 2019) , p. e0225995, ISSN 1932-6203

DOI: 10.1371/journal.pone.0225995
PMID: 31805176

12 p, 347.3 KB

The record appears in these collections:
Research literature > UAB research groups literature > Research Centres and Groups (research output) > Health sciences and biosciences > Institut d'Investigació en Ciencies de la Salut Germans Trias i Pujol (IGTP)
Articles > Research articles
Articles > Published articles