Symptomatic hypermobility is a spectrum disorder called Hypermobility Spectrum Disorders (HSD) (Castori et al. 2017) and Hypermobile Ehlers-Danlos Syndrome (hEDS) (Malfait et al. 2017). They are hereditary connective tissue disorders associated with multiple joint pain and laxity, although there may be significant non-articular features and co-morbidities that provide challenges to individuals and complicate management. Within the multidisciplinary team, physiotherapy plays a central role in management (Engelbert et al. 2017).
Although the prevalence of the condition in the general population is estimated at only 0.75% and 2% (Hakim and Sahota 2006), 30% of patients referred to an adult UK musculoskeletal triage service were found to have symptomatic hypermobility (Connelly et al. 2014) and similar prevalence rates have been found in adult rheumatology and our Trust’s pain services (To et al. 2017). However, the conditions are still under-recognised, with a lack of knowledge and understanding within physiotherapy practice related to assessment and management (Lyell et al. 2014). The condition is associated with a wide range of symptoms, such as pain, fatigue, joint instability, weak muscles, impaired proprioception and coordination difficulties and repeated cycles of injury (Terry et al. 2015). These can negatively influence functional activities such as walking (Bates and Alexander 2015) and quality of life (Scheper et al. 2016) and have implications for physiotherapy management in terms of, for example, responses to strengthening exercise (To and Alexander 2018). The negative psychological sequelae have been well-documented (Smith et al. 2014), although there is still much to understand about the complexity of influences on psychosocial functioning and how these might be managed. Importantly, due to effects on connective tissues throughout the body, there may be additional effects on other body systems, with autonomic, cardiovascular and gastrointestinal symptoms commonly reported (Castori et al. 2017). To date, the strongest associations are with anxiety disorders, orthostatic intolerance, a variety of functional gastrointestinal disorders, and pelvic and bladder dysfunction which complicate and protract treatment times.
There is now better understanding of impairments to target with exercise and advice , however, there has been no systematic use of this knowledge to help design an intervention that could then be tested for effectiveness.
Research Question: What should be included in an intervention to improve pain, function, activity levels and quality of life for people who have symptomatic hypermobility? Is the intervention feasible and acceptable to deliver in an NHS department and feasible to test for clinical and cost effectiveness?
Research Objectives 1. Define a package of care for people with symptomatic hypermobility. 2. Assess the feasibility and acceptability of implementing this package into an NHS physiotherapy department. 3. Assess the feasibility to test the effectiveness of the package of care using a randomised controlled clinical trial.