Reviewed by Tyler Tice, PT, DPT, OCS, ATC

Introduction

Joint hypermobility disorders affect a smaller portion of the population, but when symptomatic they can have a major effect on quality of life. More severe hypermobility disorders, such as Hypermobile Ehlers-Danlos Syndrome (EDS) can be difficult to diagnose and distinguish from newly named disorders such as Hypermobility Spectrum Disorder (HSD). Due to their perceived similarities, this article strives to compare the two disorders (EDS and HSD) to determine if they present similarly and therefore can be treated similarly.

Methods

The study included 97 adult patients with symptomatic generalized hypermobility syndrome recruited by physiotherapists, physiatrists, rheumatologists, and other health care professions. Variable used in the study included the 2017 diagnostic criteria for hypermobile EDS (hEDS), symptom severity (using quantitative and qualitative measures), and extra-articular manifestations. Those that did not fit the 3 criteria for hEDS were classified as having HSD. Patients were assessed at three times: baseline, 6 months, and more than 12 months. Following a PT eval, each patient was provided with a POC with a focus on body awareness or proprioception, low resistance exercises to strengthen deep and stabilizer muscles in closed or semi-closed chain.

Results

Out of 97 patients, 61 were classified as having hEDS, and the others (36) classified as having HSD. The median age of participants was 41 years old and overwhelmingly female (93%). Those classified as having hEDS had a higher Beighton score, more family history of the condition, and more musculoskeletal pain, more occurrence of chronic or recurrent dislocations than those classified with HSD. At 6 months, 37% of 76 patients not lost to follow up considered improvement in their condition. After 12 months, 54% of 59 patients not lost to follow up considered improvement in their condition. Improvement at 12 months were associated with the following factors: initial pain intensity, sleep disturbance, family history of hypermobility.

Discussion

According to this study, physical therapy is beneficial in patient symptoms for about half of those with hEDS and HSD. It remains difficult to determine significant difference in symptoms between the two groups: hEDS and HSD. Within both groups, a similar amount (about 50%) reported similarities of chronic pain symptom/problem, and neuropathic pain. This study suggests that the diagnosis (hEDS vs. HSD) does not predict outcomes following participation in physical therapy. Limitations of this study include, French/English speaking participants within a specific area of Switzerland, disproportionate ratio of females to males, and subjective data sets.

Conclusion

Using the 2017 criteria for diagnosing hEDS and HSD, this study found that the two groups presented similarly in symptom severity and limitations. About 50% of all participants believed they experienced some improvement in symptoms with PT. In conclusion, these groups can be treated similarly in the PT setting.

Reference

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