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Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls

Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N...

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Autores principales: De Baets, Stijn, Cruyt, Ellen, Calders, Patrick, Dewandele, Inge, Malfait, Fransiska, Vanderstraeten, Guy, Van Hove, Geert, van De Velde, Dominique
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9202833/
https://www.ncbi.nlm.nih.gov/pubmed/35709306
http://dx.doi.org/10.1371/journal.pone.0269608
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author De Baets, Stijn
Cruyt, Ellen
Calders, Patrick
Dewandele, Inge
Malfait, Fransiska
Vanderstraeten, Guy
Van Hove, Geert
van De Velde, Dominique
author_facet De Baets, Stijn
Cruyt, Ellen
Calders, Patrick
Dewandele, Inge
Malfait, Fransiska
Vanderstraeten, Guy
Van Hove, Geert
van De Velde, Dominique
author_sort De Baets, Stijn
collection PubMed
description Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient’s level of participation.
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spelling pubmed-92028332022-06-17 Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls De Baets, Stijn Cruyt, Ellen Calders, Patrick Dewandele, Inge Malfait, Fransiska Vanderstraeten, Guy Van Hove, Geert van De Velde, Dominique PLoS One Research Article Ehlers-Danlos syndrome and hypermobility spectrum disorder affect daily life. There is a lack of research that investigates how the disease affects aspects of participation. This study investigates whether there is a difference in the level of participation in society in persons with vascular EDS (N = 18), hypermobile EDS (N = 20), classical EDS (N = 4) and Hypermobility Spectrum Disorder (N = 27), compared to a healthy control group (N = 69) and fibromyalgia (N = 69). In this retrospective case-control study, the Ghent Participation Scale was completed by all participants. Each patient with EDS and HSD was matched by age and sex to healthy controls. The hEDS and HSD group were compared with the healthy control group and a positive control group (persons with fibromyalgia). The results show that there was a significant lower overall participation score for persons with hEDS/HSD compared to the healthy control group. In addition, significant differences were observed in the subscores self-performed activities and delegated activities in the hEDS/HSD group compared to healthy controls, being HEDS/HSD patients who obtained the lower scores. Further research is needed to obtain representative results of the participation level for the EDS/HSD population. In this way, interventions can be set up for patients with EDS in an evidence-based way and that are appropriate to the patient’s level of participation. Public Library of Science 2022-06-16 /pmc/articles/PMC9202833/ /pubmed/35709306 http://dx.doi.org/10.1371/journal.pone.0269608 Text en © 2022 De Baets et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
De Baets, Stijn
Cruyt, Ellen
Calders, Patrick
Dewandele, Inge
Malfait, Fransiska
Vanderstraeten, Guy
Van Hove, Geert
van De Velde, Dominique
Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title_full Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title_fullStr Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title_full_unstemmed Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title_short Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
title_sort societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9202833/
https://www.ncbi.nlm.nih.gov/pubmed/35709306
http://dx.doi.org/10.1371/journal.pone.0269608
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