{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T22:57:05Z","timestamp":1790636225253,"version":"4.1.0"},"reference-count":55,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2022,6,16]],"date-time":"2022-06-16T00:00:00Z","timestamp":1655337600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"research foundation Flanders","award":["1842318N"],"award-info":[{"award-number":["1842318N"]}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:p>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\u2019s level of participation.<\/jats:p>","DOI":"10.1371\/journal.pone.0269608","type":"journal-article","created":{"date-parts":[[2022,6,16]],"date-time":"2022-06-16T17:52:17Z","timestamp":1655401937000},"page":"e0269608","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":9,"title":["Societal participation in ehlers-danlos syndromes and hypermobility spectrum disorder, compared to fibromyalgia and healthy controls"],"prefix":"10.1371","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6856-5305","authenticated-orcid":true,"given":"Stijn","family":"De Baets","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellen","family":"Cruyt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Patrick","family":"Calders","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Inge","family":"Dewandele","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fransiska","family":"Malfait","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guy","family":"Vanderstraeten","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Geert","family":"Van Hove","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dominique","family":"van De Velde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2022,6,16]]},"reference":[{"issue":"16","key":"pone.0269608.ref001","doi-asserted-by":"crossref","first-page":"1339","DOI":"10.3109\/09638280903514739","article-title":"Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type","volume":"32","author":"L Rombaut","year":"2010","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"pone.0269608.ref002","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1016\/j.semarthrit.2014.05.013","article-title":"Autonomic symptom burden in the hypermobility type of Ehlers-Danlos syndrome: a comparative study with two other EDS types, fibromyalgia, and healthy controls","volume":"44","author":"I De Wandele","year":"2014","journal-title":"Seminars in arthritis and rheumatism"},{"issue":"1","key":"pone.0269608.ref003","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1111\/j.1399-0004.2012.01858.x","article-title":"The Ehlers-Danlos syndrome, a disorder with many faces","volume":"82","author":"A De Paepe","year":"2012","journal-title":"Clin Genet"},{"issue":"1","key":"pone.0269608.ref004","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1002\/ajmg.c.31552","article-title":"The 2017 international classification of the Ehlers-Danlos syndromes","volume":"175","author":"F Malfait","year":"2017","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"pone.0269608.ref005","doi-asserted-by":"crossref","first-page":"212","DOI":"10.1002\/ajmg.c.31554","article-title":"Pain management in the Ehlers-Danlos syndromes","volume":"175","author":"P Chopra","year":"2017","journal-title":"American journal of medical genetics Part C, Seminars in medical genetics"},{"issue":"2","key":"pone.0269608.ref006","doi-asserted-by":"crossref","DOI":"10.3390\/genes10020135","article-title":"Expanding the Clinical and Mutational Spectrum of Recessive AEBP1-Related Classical-Like Ehlers-Danlos Syndrome","volume":"10","author":"M Ritelli","year":"2019","journal-title":"Genes (Basel)"},{"issue":"4","key":"pone.0269608.ref007","doi-asserted-by":"crossref","first-page":"256","DOI":"10.1016\/j.mpmed.2018.01.004","article-title":"The rheumatological heritable disorders of connective tissue","volume":"46","author":"H Kazkaz","year":"2018","journal-title":"Medicine"},{"issue":"10","key":"pone.0269608.ref008","doi-asserted-by":"crossref","first-page":"597","DOI":"10.1097\/GIM.0b013e3181eed412","article-title":"Clinical and genetic aspects of Ehlers-Danlos syndrome, classic type","volume":"12","author":"F Malfait","year":"2010","journal-title":"Genet Med"},{"key":"pone.0269608.ref009","volume-title":"ICF, International Classification of Functioning, Disability and Health","author":"WHO","year":"2001"},{"issue":"9","key":"pone.0269608.ref010","doi-asserted-by":"crossref","first-page":"S5","DOI":"10.1016\/j.apmr.2009.10.036","article-title":"Issues in the conceptualization and measurement of participation: an overview","volume":"91","author":"M. 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