Rheumatol Int. 2026 May 21;46(6):95. doi: 10.1007/s00296-026-06134-z.
ABSTRACT
Hypermobile Ehlers-Danlos Syndrome (hEDS) is associated with joint hyperflexibility, pain, and connective tissue frailty. Patients are at high risk for fracture due to poor proprioception. This study reports on the mental and physical health, pain, physical activity, and kinesiophobia in patients with hEDS, and explores bone mineral density and fracture risk. This single-center, cross-sectional prospective study was approved by the IRB (HHC-2022-0143). Patients with diagnosed hEDS were consented and completed demographic forms, activity levels, PROMIS-10 Global Health Assessments, and the Tampa Kinesiophobia Scale, prior to DXA (Dual-energy X-ray absorptiometry) scans. Descriptive and inferential statistics were conducted including correlations and univariate regression analyses. All patients were female and pre-menopausal with a mean age of 36 (range: 19-55). Patients maintained an overall adequate bone mineral density (Spine: 1.16 ± 0.12 g/cm3, Femur: 0.961 ± 0.09 g/cm3 ) though three patients were identified as osteopenic and 50% had fractured as an adult. The PROMIS-10 mental health T-score and pain were strongly negatively correlated (rs = -0.87, p < 0.001) as were the PROMIS-10 physical function T-score and pain (rs = -0.78, p < 0.001). Kinesiophobia was negatively correlated with low mental health (rs = -0.56, p = 0.03) and with physical function T-scores (rs = -0.75, p < 0.001). This study illustrates the association of mental health, physical function, chronic pain, and kinesiophobia in this unique patient population. Patients had higher fracture incidence without a significant reduction in bone mineral density. Future interventions could be directed at exploring disease-specific rehabilitation programs.
PMID:42168630 | DOI:10.1007/s00296-026-06134-z
