Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazka H, Levy H (2017) Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome type III and Ehlers-Danlos syndrome hypermobility type): clinical description and natural history. Am J Med Genet C 175(1):48–69. https://doi.org/10.1002/ajmg.c.31538

Article  Google Scholar 

Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A (2017) A framework for the classification of joint hypermobility and related conditions. Am J Med Genet C 175(1):148–157. https://doi.org/10.1002/ajmg.c.31539

Article  Google Scholar 

Aubry-Rozier B, Schwitzguebel A, Valerio F, Tanniger J, Paquier C, Berna C, Hügle T, Benaim C (2021) Are patients with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder so different? Rheumatol Int 41(10):1785–1794. https://doi.org/10.1007/s00296-021-04968-3

Article  PubMed  PubMed Central  Google Scholar 

Rombaut L, Malfait F, Cools A, De Paepe A, Calders P (2010) Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil 32(16):1339–1345. https://doi.org/10.3109/09638280903514739

Article  PubMed  Google Scholar 

Voermans NC, Knoop H, Bleijenberg G, van Engelen BG (2010) Pain in Ehlers-Danlos syndrome is common, severe, and associated with functional impairment. J Pain Symptom Manag 40(3):370–378. https://doi.org/10.1016/j.jpainsymman.2009.12.026

Article  Google Scholar 

Voermans NC, Knoop H (2011) Both pain and fatigue are important possible determinants of disability in patients with the Ehlers-Danlos syndrome hypermobility type. Disabil Rehabil 33(8):706–707. https://doi.org/10.3109/09638288.2010.531373

Article  PubMed  Google Scholar 

Checa A (2012) Severe cartilage damage of the knee joint in two young women with hypermobility. Rheumatol Int 32(11):3661–3664. https://doi.org/10.1007/s00296-011-2071-z

Article  PubMed  Google Scholar 

Luder G, Aeberli D, Mueller Mebes C, Haupt-Bertschy B, Verra ML, Baeyens JP (2022) Correlation of muscle and bone parameters, daily function and participation in women with generalized joint hypermobility: a descriptive evaluation. J Musculoskel Neuronal Interact 22(1):15–26

Google Scholar 

Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, Bloom L, Bowen JM, Brady AF, Burrows NP, Castori M, Cohen H, Colombi M, Demirdas S, De Backer J, De Paepe A, Fournel-Gigleux S, Frank M, Ghali N, Giunta C et al (2017) The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C 175(1):8–26. https://doi.org/10.1002/ajmg.c.31552

Article  Google Scholar 

Gensemer C, Burks R, Kautz S, Judge DP, Lavallee M, Norris RA (2021) Hypermobile Ehlers-Danlos syndromes: complex phenotypes, challenging diagnoses, and poorly understood causes. Dev Dynamics: Official Publication Am Association Anatomists 250(3):318–344. https://doi.org/10.1002/dvdy.220

Article  CAS  Google Scholar 

Engelbert RH, Juul-Kristensen B, Pacey V, de Wandele I, Smeenk S, Woinarosky N, Sabo S, Scheper MC, Russek L, Simmonds JV (2017) The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C 175(1):158–167. https://doi.org/10.1002/ajmg.c.31545

Article  Google Scholar 

Peterson B, Coda A, Pacey V, Hawke F (2018) Physical and mechanical therapies for lower limb symptoms in children with hypermobility spectrum disorder and Hypermobile Ehlers-Danlos Syndrome: a systematic review. J Foot Ankle Res 11:59. https://doi.org/10.1186/s13047-018-0302-1

Article  PubMed  PubMed Central  Google Scholar 

Reychler G, De Backer MM, Piraux E, Poncin W, Caty G (2021) Physical therapy treatment of Hypermobile Ehlers-Danlos syndrome: a systematic review. Am J Med Genet: A 185(10):2986–2994. https://doi.org/10.1002/ajmg.a.62393

Article  PubMed  Google Scholar 

Palmer S, Davey I, Oliver L, Preece A, Sowerby L, House S (2021) The effectiveness of conservative interventions for the management of syndromic hypermobility: a systematic literature review. Clin Rheumatol 40(3):1113–1129. https://doi.org/10.1007/s10067-020-05284-0

Article  PubMed  Google Scholar 

Garreth Brittain M, Flanagan S, Foreman L, Teran-Wodzinski P (2024) Physical therapy interventions in generalized hypermobility spectrum disorder and hypermobile Ehlers-Danlos syndrome: a scoping review. Disabil Rehabil 46(10):1936–1953. https://doi.org/10.1080/09638288.2023.2216028

Article  PubMed  Google Scholar 

Palmer S, Bridgeman K, Di Pierro I, Jones R, Phillips C, Wilson M (2019) The views of people with joint hypermobility syndrome on its impact, management and the use of patient-reported outcome measures. A thematic analysis of open-ended questionnaire responses. Musculoskelet Care 17(2):183–193. https://doi.org/10.1002/msc.1387

Article  Google Scholar 

Estrella E, Frazier PA (2024) Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States. Disabil Rehabil 46(4):731–740. https://doi.org/10.1080/09638288.2023.2176554

Article  PubMed  Google Scholar 

Zeppieri G, Jr, George SZ (2017) Patient-defined desired outcome, success criteria, and expectation in outpatient physical therapy: a longitudinal assessment. Health Qual Life Outcomes 15(1):29. https://doi.org/10.1186/s12955-017-0604-1

Article  PubMed  PubMed Central  Google Scholar 

O’Brien EM, Staud RM, Hassinger AD, McCulloch RC, Craggs JG, Atchison JW, Price DD, Robinson ME (2010) Patient-centered perspective on treatment outcomes in chronic pain. Pain Med (Malden Mass) 11(1):6–15. https://doi.org/10.1111/j.1526-4637.2009.00685.x

Article  Google Scholar 

Robinson ME, Brown JL, George SZ, Edwards PS, Atchison JW, Hirsh AT, Waxenberg LB, Wittmer V, Fillingim RB (2005) Multidimensional success criteria and expectations for treatment of chronic pain: the patient perspective. Pain Med (Malden Mass) 6(5):336–345. https://doi.org/10.1111/j.1526-4637.2005.00059.x

Article  Google Scholar 

Wilson AT, George SZ, Bialosky JE (2019) Patient-defined outcomes for pain, fatigue, emotional distress, and interference with activities did not differ by age for individuals with musculoskeletal pain. Pain Rep 4(6):e798. https://doi.org/10.1097/PR9.0000000000000798

Article  PubMed  Google Scholar 

Teran-Wodzinski P, Kumar A (2023) Clinical characteristics of patients with hypermobile type Ehlers-Danlos syndrome (hEDS) and generalized hypermobility spectrum disorders (G-HSD): an online survey. Rheumatol Int 43(10):1935–1945. https://doi.org/10.1007/s00296-023-05378-3

Article  PubMed  Google Scholar 

Tinkle BT (2020) Symptomatic joint hypermobility. Best Pract Res Clin Rheumatol 34(3):101508. https://doi.org/10.1016/j.berh.2020.101508

Article  PubMed  Google Scholar 

Clark NL, Johnson M, Rangan A, Kottam L, Swainston K (2023) The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review. Rheumatol Int 43(6):985–1014. https://doi.org/10.1007/s00296-023-05298-2

Article  PubMed  PubMed Central  CAS  Google Scholar 

Eysenbach G (2004) Improving the quality of web surveys: the Checklist for reporting results of internet E-Surveys (CHERRIES). J Med Internet Res 6(3):e34. https://doi.org/10.2196/jmir.6.3.e34

Article  PubMed  PubMed Central  Google Scholar 

Sharma A, Minh Duc NT, Luu Lam Thang T, Nam NH, Ng SJ, Abbas KS, Huy NT, Marušić A, Paul CL, Kwok J, Karbwang J, de Waure C, Drummond FJ, Kizawa Y, Taal E, Vermeulen J, Lee GHM, Gyedu A, To G, Verra ML et al (2021) A Consensus-based checklist for reporting of Survey studies (CROSS). J Gen Intern Med 36(10):3179–3187. https://doi.org/10.1007/s11606-021-06737-1

Article  PubMed  PubMed Central  Google Scholar 

Gaur PS, Zimba O, Agarwal V, Gupta L (2020) Reporting Survey Based studies - a primer for authors. J Korean Med Sci 35(45):e398. https://doi.org/10.3346/jkms.2020.35.e398

Article  PubMed  PubMed Central  Google Scholar 

Demmler JC, Atkinson MD, Reinhold EJ, Choy E, Lyons RA, Brophy ST (2019) Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ open 9(11):e031365. https://doi.org/10.1136/bmjopen-2019-031365

Article  PubMed  PubMed Central  Google Scholar 

Russek LN, Errico DM (2016) Prevalence, injury rate and, symptom frequency in generalized joint laxity and joint hypermobility syndrome in a healthy college population. Clin Rheumatol 35(4):1029–1039. https://doi.org/10.1007/s10067-015-2951-9

Article  PubMed  Google Scholar 

Murphy M, Hollinghurst S, Cowlishaw S, Salisbury C (2018) Primary care outcomes Questionnaire: psychometric testing of a new instrument. Br J Gen Practice: J Royal Coll Gen Practitioners 68(671):e433–e440. https://doi.org/10.3399/bjgp18X695765

Article  Google Scholar 

El-Daly I, Ibraheim H, Rajakulendran K, Culpan P, Bates P (2016) Are patient-reported outcome measures in orthopaedics easily read by patients? Clin Orthop Relat Res 474(1):246–255. https://doi.org/10.1007/s11999-015-4595-0