{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,29]],"date-time":"2026-01-29T13:13:22Z","timestamp":1769692402584,"version":"3.49.0"},"reference-count":47,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2021,7,21]],"date-time":"2021-07-21T00:00:00Z","timestamp":1626825600000},"content-version":"vor","delay-in-days":201,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,5,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>The aim was to ascertain occupational therapist (OT) and physiotherapist (PT) experiences of managing hypermobility spectrum disorders (HSDs) and hypermobile Ehlers-Danlos syndrome (hEDS) patients, specifically the training and confidence levels of therapists, use of evidence-based practice, accessibility of pain management and clinical psychology services, and perceived usefulness of a specialist centre in Scotland.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>A mixed-method survey was distributed to Rheumatology OTs\/PTs in Scotland. It included multiple choice and open text questions, which were analysed to reflect therapists\u2019 experiences and perception of service need.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We found that therapists in Scotland do have expertise in the management of HSD\/hEDS patients; however, this expertise tends to be concentrated in secondary care, which makes it difficult for patients who are managed in primary care to access. The majority of respondents reported lack of access to external training (80%). There was difficulty in referral to pain management services (55%) and clinical psychology (28%) among adult therapists. Paediatric services provided considerably better access to these disciplines. Of note, the majority of respondents were in favour of a specialist centre in Scotland for the training and education of therapists (94.7%) and the diagnosis and management of complex HSD\/hEDS patients (73.7%).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>More research is needed urgently to evaluate the effectiveness of therapy interventions to underpin a national guideline in order that we can improve outcomes for HSD\/hEDS patients. A specialist centre with expert and engaged clinicians would be a valuable asset in coordinating patient-focused research and conducting good-quality clinical trials.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/rap\/rkab046","type":"journal-article","created":{"date-parts":[[2021,7,21]],"date-time":"2021-07-21T17:54:57Z","timestamp":1626890097000},"source":"Crossref","is-referenced-by-count":2,"title":["Mind the gaps: therapists\u2019 experiences of managing symptomatic hypermobility in Scotland"],"prefix":"10.1093","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4656-6205","authenticated-orcid":false,"given":"Dervil M","family":"Dockrell","sequence":"first","affiliation":[{"name":"Centre for Genomic and Experimental Medicine, MRC Institute of Genetics and Cancer, University of Edinburgh, Edinburgh, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathryn M","family":"Berg","sequence":"additional","affiliation":[{"name":"Centre for Genomic and Experimental Medicine, MRC Institute of Genetics and Cancer, University of Edinburgh, Edinburgh, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Stuart H","family":"Ralston","sequence":"additional","affiliation":[{"name":"Centre for Genomic and Experimental Medicine, MRC Institute of Genetics and Cancer, University of Edinburgh, Edinburgh, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2021,7,21]]},"reference":[{"key":"2022030821023374500_rkab046-B1","doi-asserted-by":"crossref","first-page":"1021","DOI":"10.1016\/j.mcna.2019.08.002","article-title":"Symptomatic joint hypermobility: the hypermobile type of Ehlers-Danlos syndrome and the hypermobility spectrum disorders","volume":"103","author":"Tinkle","year":"2019","journal-title":"Med Clin North Am"},{"key":"2022030821023374500_rkab046-B2","doi-asserted-by":"crossref","first-page":"291","DOI":"10.1249\/JSR.0b013e3182a4b933","article-title":"Joint hypermobility and sport: a review of advantages and disadvantages","volume":"12","author":"Baeza-Velasco","year":"2013","journal-title":"Curr Sports Med Rep"},{"key":"2022030821023374500_rkab046-B3","first-page":"129","volume-title":"The Ehlers-Danlos syndrome","author":"Malfait","year":"2014"},{"key":"2022030821023374500_rkab046-B4","author":"Malfait","year":"2017"},{"key":"2022030821023374500_rkab046-B5","doi-asserted-by":"crossref","first-page":"1371993","DOI":"10.1080\/17482631.2017.1371993","article-title":"A humanisation approach for the management of Joint Hypermobility Syndrome\/Ehlers-Danlos Syndrome-Hypermobility Type (JHS\/EDS-HT)","volume":"12","author":"Clark","year":"2017","journal-title":"Int J Qual Stud Health Well-Being"},{"key":"2022030821023374500_rkab046-B6","doi-asserted-by":"crossref","first-page":"354","DOI":"10.1093\/fampra\/cmv026","article-title":"Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care","volume":"32","author":"Terry","year":"2015","journal-title":"Fam Pract"},{"key":"2022030821023374500_rkab046-B7","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1002\/msc.184","article-title":"An exploration of the prevalence of hypermobility and joint hypermobility syndrome in Omani women attending a hospital physiotherapy service","volume":"9","author":"Clark","year":"2011","journal-title":"Musculoskeletal Care"},{"key":"2022030821023374500_rkab046-B8","doi-asserted-by":"crossref","first-page":"c7167","DOI":"10.1136\/bmj.c7167","article-title":"Easily missed? 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