At-home Exercises May Help Shoulder Function in Hypermobile EDS
Evidence-based, at-home exercise programs may ease shoulder instability in women with hypermobile Ehlers–Danlos syndrome (hEDS) and those with hypermobile spectrum disorder (HSD), a small study suggests.
Two six-month programs — one based on the latest hEDS/HSD research and another on shoulder instability research — led to comparable, clinically meaningful improvements in the shoulder function of patients.
However, there were no detectable reductions in pain-related fear of movement after either program.
These findings highlight the beneficial effects of evidence-based, at-home exercise programs to improve shoulder function and related quality of life in hEDS/HSD patients. They also suggest that multidisciplinary, supervised approaches may be more effective at reducing fear of movement, as reported in previous studies, the researchers noted.
Larger studies are needed to confirm these findings.
The study, “Home-based exercise therapy for treating shoulder instability in patients with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders. A randomized trial,” was published in the journal Disability and Rehabilitation.
hEDS, the most common type of EDS, is characterized by not only soft, smooth, and fragile skin, but also joints that are able to move more than normal — a shared feature with HSD.
The shoulder is commonly affected in hEDS, with about 85% of patients experiencing shoulder pain, and more than half reporting shoulder dislocations.
Multidirectional shoulder instability (MDI) is a frequent symptom of hEDS and HSD, and “since the shoulder is crucial for upper limb functionality,” daily activities of “hEDS/HSD patients might be strongly affected,” the researchers wrote.
While physiotherapy is highly recommended for these patients, as it might improve quality of life and reduce pain-related fear of moving, “evidence-based treatment guidelines remain to be determined,” the researchers added.
At-home exercise programs may provide some advantages to these patients, such as less travel time and a higher likelihood of reaching the high training frequency likely necessary to achieve greater benefits.
With this in mind, a team of researchers in Belgium conducted a pilot study (NCT04666896) to evaluate the effects of two six-month, at-home exercise programs for treating MDI in 13 women with hEDS and eight women with HSD.
Participants were recruited at Ghent University Hospital’s Center for Medical Genetics, in Belgium. They were randomly assigned to undergo a hEDS/HSD-targeted program (11 women) or an MDI-targeted program (10 women), while continuing with usual therapy (medication and physiotherapy).
Both programs consisted of four types of exercises, each divided into three levels of difficulty, and involved weights, elastic bands, and a ball.
The first program, developed based on recent hEDS/HSD research data, included shrug exercises, external rotation exercises, bench slides, and wall slides. The second, meant to reflect evidence-based MDI standard care, consisted of exercises targeting balance, isometric strength, rotator cuff muscles, and open chain elevation (where the hand is not fixed in position).
Participants received an exercise booklet and videos with a detailed description and demonstration of each exercise, along with the recommended number of repetitions.
Four in-person sessions were scheduled: an initial visit at the study’s start (baseline), and after 6, 12, and 24 weeks (end of the study). Patients were advised to exercise daily from baseline to week 6, at least five times a week during weeks 7–12, and at least three times weekly during weeks 13–24.
All participants were also contacted weekly by telephone to review exercise adherence, discuss any problems, and adjust the exercise program.
The study’s main goal was to assess changes in shoulder-related quality of life, as assessed with the patient-reported Western Ontario Shoulder Index (WOSI). Secondary goals included other patient-reported measures for shoulder function, ability to perform activities, pain-related fear of movement, and pain thresholds.
Due to the COVID-19 pandemic, in-person sessions were discontinued in the period from March 16 to July 8, and the study ended prematurely, with six women (54.5%) in the tailored program and eight women (80%) in the standard program completing the last assessment.
Results showed that both programs led to comparable, significant improvements in all measures, except for pain-related fear of movement and pain thresholds.
These improvements were considered clinically meaningful for nearly all shoulder-related measures, highlighting the beneficial effects of both programs in terms of shoulder function and related quality of life.
While no significant differences were found between groups, “all patient-based outcomes designed to assess [shoulder or upper extremity disability] support the assumption that from the patient’s perspective, the negative impact of their shoulder instability on their everyday functioning decreased due to home-based exercise therapy,” the researchers wrote.
Since pain-related fear of movement was not assessed specifically for tasks involving the shoulder, the absence of improvements may “not necessarily mean that fear of moving the unstable shoulder did not change,” the team wrote.
Future studies should include a task-specific measure of fear of movement to be able to draw definitive conclusions, the team suggested.
Also, given that this fear may be influenced by a number of factors, from pain to fatigue, “a multidisciplinary, supervised approach might be more effective for altering [pain-related fear of movement] in this patient population,” as suggested by previous studies, the researchers wrote.
“The present study is the first to provide evidence for a positive impact of home-based exercise therapy on shoulder function in hEDS/HSD patients with MDI,” the team wrote, adding that “future research in this field would be of great help in expanding physiotherapists’ confidence in managing shoulder instability in this patient population.”
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