The examination of Dynamic Movement Orthoses in the management of shoulder instability in people with hEDS/HSD

Project Summary

Shoulder pain is common in hEDS/HSD with the neck and shoulder being described as the main areas of pain. Shoulder pain and instability can be severely debilitating leading to reduced arm function. Physiotherapy can be a key treatment for shoulder instability in hEDS/HSD to help with rehabilitation.

Dynamic Movement Orthoses are fabric elastomeric orthotic garments meaning that they support the joint while moving around by stretching and then returning to their original shape. They are made to fit each individual, areas of need are reinforced and there is a biomechanical panelling that strengthens the garment while moving. Therefore, they may help people with shoulder instability by providing a level of compression specific to the individual that supports the joint while moving and could improve neuromuscular activity. Pain, fatigue, and fear of injury have been suggested as common barriers to exercise for people with hEDS/HSD, and Dynamic Movement Orthoses could be a treatment that provides more stability and control of the joint while moving, reducing some barriers to exercise and recovery.

The project’s aims are to improve the treatment options for hEDS/HSD by rigorously and robustly researching the use of dynamic movement orthoses. The plan is to do 3 stages of research:

Stage 1 – completed!

A systematic literature review on the interventions available to the hEDS/HSD unstable shoulder – full article can be read here

Stage 2 – recruitment coming soon! Watch this space!

A survey with the aim of examining the use of Dynamic Elastomeric Fabric Orthoses (DEFO) to help support shoulder exercise and function in individuals with hEDS/HSD. In particular, we want to understand the current awareness and interest in DEFO and the perceived enablers and barriers for their use.

Stage 3 – to be done in the future.

An intervention study that will look at whether DEFO works and how it works. This will include looking at outcomes like pain, health related quality of life, patient satisfaction to see if it works, and strength, range of movement and proprioception to see how it works.

Patient and Public Involvement Group

A Patient and Public Involvement (PPI) Group has been established to guide and advise our research project. This group consists of individuals with hEDS/HSD, a specialist Physiotherapist and an Orthotist. PPI groups provide valuable insights from those directly affected by the conditions being studied, enhancing the research’s quality by aligning it with the real-world needs and experiences of patients. By involving patients and the public, we can refine our research questions, methodology, and dissemination strategies, ensuring the outcomes are both meaningful and accessible to the target population. Furthermore, PPI fosters a sense of ownership and trust among participants, ultimately contributing to more ethical and patient-centred research practices.

Doctoral Supervision Team

• Dr Gemma Pearce, Associate Professor, Coventry University
• Dr Jason Tallis, Associate Professor, Coventry University
• Professor Shea Palmer, Cardiff University, Coventry University and University Hospitals Coventry & Warwickshire NHS Trust
• Dr Behnam Liaghat, University of Southern Denmark

Other contributors

Lucy Silvester, NIHR Doctoral Clinical Academic Fellow, University Hospitals Coventry & Warwickshire NHS Trust and Coventry University

Other related Publications

Here is a publication examining a case study on the use of these orthoses for the hip joint of a person with hEDS.