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Quality of Life With Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome: A Systematic Review of Psychosocial Interventions.

Musculoskeletal care
March 1, 2025
Erika Bohling-Davis et al. (5 authors)
Systematic ReviewJournal ArticleReviewHuman Study
Study Details

Study Goal

The researchers aimed to assess the effectiveness of psychosocial interventions, particularly mindfulness and CBT, in improving quality of life for individuals with EDS/JHMS.

Results Summary

The study found weak evidence that psychosocial interventions, including mindfulness and CBT, generally improved quality of life compared to no intervention, though methodological flaws and high risk of bias limit confidence in these findings. Some studies also noted improvements in pain and fatigue.

Population

Individuals diagnosed with EDS/JHMS, aged 13-69, predominantly female (248 females, 8 males), ethnicity not reported.

Effective Dosage

Not specified

Duration

Not specified

Interactions

None mentioned

Extracted Claims (5)
InterventionDirectionEndpointPopulationDosageImpactClaim #
psychosocial interventions
increase
QoL
people with wider chronic pain conditions
-
may improve
#1
psychosocial interventions containing mindfulness and CBT
increase
QoL
participants diagnosed with EDS/JHMS
-
resulted in a general improvement
#2
mindfulness and CBT
increase
QOL
EDS/JHMS
-
improving
#3
mindfulness and CBT
decrease
pain
EDS/JHMS
-
improving
#4
mindfulness and CBT
decrease
fatigue
EDS/JHMS
-
improving
#5
Abstract

BACKGROUND: Psychosocial interventions may improve QoL in people with wider chronic pain conditions. However, the evidence requires refining for application to EDS/JHMS. This systematic review aimed to identify, assess and synthesise the evidence of the effectiveness of psychosocial interventions concerning EDS/JHMS. EBSCO, OpenGrey, Cochrane, Prospero, Researchgate and BPS Wiley online were searched for papers published approximately 2000-2024 for studies in which (1) Participants diagnosed with EDS/JHMS. (2) Quantitative or mixed methods. (3) Assessed a Psychosocial intervention to a (4) quality of life outcome. (5) in English. EPHPP quality assessment tool was used to assess the quality and risk of bias. MAIN TEXT: The study identified six studies, including 343 participants aged 13-69 (F = 248, M = 8), of unknown ethnicity. Five studies were cohort and one non-randomised controlled trial. Key methodological flaws included no reported effect size and no control group. With quality assessed as low (5) or moderate (1), there was weak evidence that psychosocial interventions containing mindfulness and CBT resulted in a general improvement in QoL compared to no intervention. CONCLUSIONS: Findings from this review indicate the potential of mindfulness and CBT in improving QOL in EDS/JHMS and, in some studies, pain and fatigue. However, existing research is at high risk of bias, has low methodological quality, and is predominately focused on female patients. Future research should adopt methodologically robust approaches such as RCTs and more inclusive samples and consider co-production.

Medical Subject Headings (MeSH)
HumansQuality of LifePsychosocial InterventionEhlers-Danlos SyndromeJoint InstabilityAdultFemale
Study Links
Quality Scores
SafetyNot Assessed
Efficacy65/10
Quality45/10
Research Impact Scores
APT Score0.05
Weight Score2.00
Normalized Score0.55
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