People with hypermobile joints participate less in social activities because of chronic pain, according to a recent study comparing patients with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) to those with classic and vascular forms of the disorder.
“The results of the present study demonstrate that patients with EDS and HSD are limited in performing everyday activities and also require guidance and support from a multidisciplinary team to improve their symptoms [as] Advice on appropriate employment and sport and help in choosing appropriate functional aids in daily life,” the researchers write.
The study, “Societal involvement in Ehlers-Danlos syndromes and hypermobility spectrum disorders compared to fibromyalgia and healthy controls‘ was published in the magazine PLUS ONE.
EDS is an umbrella term for several connective tissue disorders caused by a defect in the production of collagen – a vital protein that makes up skin, joints and ligaments. As a result, many patients suffer from symptoms such as hypermobile joints and brittle skin. Recurring joint dislocations, chronic joint pain, muscle weakness, extreme fatigue and easy bruising are also frequently reported.
The most common types of EDS are hypermobile, classic (cEDS), and vascular (vEDS). While cEDS and vEDS are known to be caused by genetic mutations, in most cases the mutations that lead to hEDS have yet to be identified. Therefore, the diagnosis of hEDS is dependent on specific clinical criteria that have since been updated in 2017. People are diagnosed with HSD when they have joint hypermobility but do not meet all hEDS criteria.
Although patients with HSD have fewer signs of skin, soft tissue, and skeletal problems compared to hEDS, both disorders are associated with difficulty performing activities of daily living and reduced quality of life.
In the study, researchers from the University of Ghent in Belgium wanted to compare the level of participation in society between people with hEDS, cEDS, vEDS and HSD and healthy controls. They also looked at the differences between patients with EDS and patients with a clinically similar but more common condition called fibromyalgia.
Recruited patients were asked to complete a survey called the Ghent Participation Scale to assess their social participation. In this test, higher scores indicate greater perceived participation. The test is also divided into three subscales, including subscale one: “Self-entered activities consistent with personal choices and desires”, subscale two: “Self-entered activities that lead to esteem and social acceptance” and subscale three: “Delegates activities. “
A total of 69 EDS patients, 69 healthy subjects matched for age and sex, and 69 fibromyalgia patients were included in the study. The overall mean age was 41 years and 78.7% of the participants were women.
For the analysis, HSD and hEDS patients were combined into one group because their clinical symptoms are closely related. Researchers also grouped cEDS and vEDS patients to increase the sample size.
The results showed that people with hEDS/HSD had a significantly lower participation score compared to the control group (44.58 vs. 55.66). In addition, participation values for self-conducted activities for hEDS/HSD participants were also significantly lower (54.80 vs. 60.74) as well as participation values for delegated activities (38.76 vs. 57.94).
“Severe joint problems in people with hEDS and HSD appear to contribute to chronic pain in daily life, which may explain the reported lower participation,” the researchers wrote.
hEDS/HSD patients had a lower overall participation score compared to participants in the cEDS/vEDS group (44.58 vs. 52.20). In addition, participation values for delegated activities were also lower in hEDS/HSD patients than in cEDS/vEDS patients (38.76 vs. 51.30).
However, cEDS/vEDS patients did not show different levels of engagement for total participation score, self-performed activities, and delegated activities score compared to healthy controls or patients with fibromyalgia.
To explain these results, the researchers suggested that cEDS/vEDS patients may make greater efforts to participate despite their symptoms or may have better coping strategies for their pain.
“EDS has a major impact on participants’ day-to-day functioning, which may be reflected in a variety of consequences that the disorder exerts in a patient’s life,” the researchers wrote.
They added that additional studies are needed to validate these findings: “In this way, interventions for patients with EDS can be evidence-based and appropriate to the patient’s involvement.”