Exploring the experiences of diagnosis and physiotherapy management in patients with hypermobility spectrum disorders and shoulder instability: a focus group report.

Melissa Johnson; Lucksy Kottam; Amar Rangan

doi:10.59210/7992jc25

Authors

Melissa Johnson The James Cook University Hospital, Middlesbrough Author
Lucksy Kottam Department of Health Sciences & HYMS, University of York, UK Author
Amar Rangan University of York; University of Oxford; Author

DOI:

https://doi.org/10.59210/7992jc25

Keywords:

Hypermobility Spectrum Disorder, Ehlers Danlos Syndrome, physiotherapy, focus group, shoulder instability

Abstract

Objective
To explore patients experiences of the diagnosis and management of hypermobility spectrum disorders (HSD)and shoulder instability.
Design
An exploratory qualitative design. A focus group was organised, transcribed, and analysed. The collected data was analysed using a thematic approach.
Setting
A single NHS Trust within the UK
Participants
Four people with HSD and shoulder instability
Results
All participants identified difficulties and delays in receiving a diagnosis for their HSD. They reported a lack of awareness amongst health care professionals, including physiotherapists. The participants described mixed experiences of physiotherapy treatment and alongside a perceived lack of awareness of HSD, they reported increased levels of anxiety prior to commencing treatment. Only one patient had received specialist shoulder physiotherapy for their shoulder instability resulting in a positive experience.
Conclusions
Physiotherapy is perceived by patients as an important component in the management of HSD and shoulder instability and should include appropriate exercise therapy and advice on joint management and on shoulder relocation. However, patients continue to report variable experiences of physiotherapy. Improving awareness and education amongst physiotherapists is essential for improving the experiences and long-term management of this patient group. Future work should explore what educational strategies would be optimal for health care professionals and which treatment strategies patients find the most beneficial.

Downloads

Download data is not yet available.

References

1. Johannessen EC, Reiten HS, L vaas H, Maeland S, Juul-Kristensen B. Shoulder function, pain and health related quality of life in adults with joint hypermobility syndrome/Ehlers-Danlos syndrome-hypermobility type. Disabil Rehabil 2016;38:1382–90. https://doi.org/10.3109/09638288.2015.1102336.

2. Baeza-Velasco C, G ly-Nargeot MC, Vilarrasa AB, Bravo JF. Joint hypermobility syndrome: 316 Problems that require psychological intervention. Rheumatol Int 2011;31:1131–6. https://doi.org/10.1007/s00296-011-1839-5.

3. Palmer S, Terry R, Rimes KA, Clark C, Simmonds J, Horwood J. Physiotherapy management of joint hypermobility syndrome - a focus group study of patient and health professional perspectives. Physiotherapy (United Kingdom) 2016;102:93–102. https://doi.org/10.1016/j.physio.2015.05.001.

4. Rombaut L, Malfait F, Cools A, De Paepe A, Calders P. Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers Danlos syndrome hypermobility type. Disabil Rehabil 2010;32:1339–45. https://doi.org/10.3109/09638280903514739.

5. Celletti C, Castori M, Morico G, Camerota F. Joint hypermobility syndrome/ehlers-danlos syndrome hypermobility type: Constructing a rehabilitative approach. Int J Clin Rheumtol 2014;9:103–6. https://doi.org/10.2217/ijr.13.74.

6. Tinkle B, Castori M, Berglund B, Cohen H, Grahame R, Kazkaz H, et al. 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 Part C Semin Med Genet 2017;175:48–69. https://doi.org/10.1002/ajmg.c.31538.

7. Kumar B, Lenert P. Joint Hypermobility Syndrome: Recognizing a Commonly Overlooked Cause of Chronic Pain. Am J Med 2017;130:640–7. https://doi.org/10.1016/j.amjmed.2017.02.013.

8. Simpson MR. Benign joint hypermobility syndrome: Evaluation, diagnosis, and management. J Am Osteopath Assoc 2006;106:531–6. https://doi.org/10.7556/jaoa.2006.106.9.531.

9. BSPAR Guidelines for management of Joint Hypermobility Syndrome in children and young people2012[availableonline]http://www.mcns.scot.nhs.uk/sparn/wp- content/uploads/sites/8/2017/01/Guidelines-for-Management-of-Joint-Hypermobility- Syndrome-v1.1-June-2013.pdf

10. Kole. A and Faurisson F. The Voice of 12000 patients. 2009 Eurodis [available online] https://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf

11. Terry RH, Palmer ST, Rimes KA, Clark CJ, Simmonds J V., Horwood JP. Living with joint hypermobility syndrome: Patient experiences of diagnosis, referral and self-care. Fam Pract 2015;32:354–8. https://doi.org/10.1093/fampra/cmv026.

12. Clark CJ, Knight I. A humanisation approach for the management of Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT). Int J Qual Stud Health Well-Being 2017;12. https://doi.org/10.1080/17482631.2017.1371993.

13. Wolf JM, Cameron KL, Owens BD. Impact of joint laxity and hypermobility on the musculoskeletal system. J Am Acad Orthop Surg 2011;19:463–71. https://doi.org/10.5435/00124635-201108000-00002.

14. Jaggi A, Alexander S, Herbert R, Funk L, Ginn KA. Does surgery followed by physiotherapy improve short and long term outcome for patients with atraumatic shoulder instability compared with physiotherapy alone? - Protocol for a randomized controlled clinical trial. BMC Musculoskelet Disord 2014;15:1–6. https://doi.org/10.1186/1471-2474-15-439.

15. Itoi E. Pathophysiology and treatment of atraumatic instability of the shoulder. J Orthop Sci 2004;9:208–13. https://doi.org/10.1007/s00776-003-0748-1.

16. Nourissat G, Vigan M, Hamonet C, Doursounian L, Deranlot J. Diagnosis of Ehlers Danlos Syndrome after a first shoulder dislocation. Journal of shoulder and elbow surgery 2018; 27: 65-69.

17. Cameron KL, Duffey ML, Deberardino TM, Stoneman PD, Jones CJ, Owens BD. Association of generalized joint hypermobility with a history of glenohumeral joint instability. J Athl Train 2010;45:253–8. https://doi.org/10.4085/1062-6050-45.3.253.

18. Simmonds J V., Herbland A, Hakim A, Ninis N, Lever W, Aziz Q, et al. Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome– hypermobility type. Disabil Rehabil 2019;41:445–55. https://doi.org/10.1080/09638288.2017.1398278.

19. Calner T, Isaksson G, Michaelson P. Physiotherapy treatment experiences of persons with persistent musculoskeletal pain: A qualitative study. Physiother Theory Pract 2021;37:28–37. https://doi.org/10.1080/09593985.2019.1622162.

20. Josephson I, Woodward-Kron R, Delany C, Hiller A. Evaluative language in physiotherapy practice: How does it contribute to the therapeutic relationship? Soc Sci Med 2015;143:128– 36. https://doi.org/10.1016/j.socscimed.2015.08.038.

21. Palmer S, Bailey S, Barker L, Barney L, Elliott A. The effectiveness of therapeutic exercise for joint hypermobility syndrome: A systematic review. Physiother (United Kingdom) 2014;100:220–7. https://doi.org/10.1016/j.physio.2013.09.002.

22. Lyell MJ, Simmonds J V., Deane JA. A study of UK physiotherapists’ knowledge and training needs in hypermobility and hypermobility syndrome. Physiother Pract Res 2016;37:101–9. https://doi.org/10.3233/PPR-160073.

23. Palmer S, Cramp F, Lewis R, Muhammad S, Clark E. Diagnosis, Management and Assessment of Adults with Joint Hypermobility Syndrome: A UK-Wide Survey of Physiotherapy Practice. Musculoskeletal Care 2015;13:101–11. https://doi.org/10.1002/msc.1091.

24. Murray B, Yashar BM, Uhlmann WR, Clauw DJ, Petty EM. Ehlers-Danlos syndrome, hypermobility type: A characterization of the patients’ lived experience. Am J Med Genet Part 387 A 2013;161:2981–8. https://doi.org/10.1002/ajmg.a.36293.