Joint hypermobility and related disorders :
studies in emotion, cognition and behavior.

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HYRESP Study: Catastrophizing and Social Responses in Individuals with Hypermobile Ehlers–Danlos Syndrome and Hypermobility Spectrum Disorders

Background: Ehlers–Danlos syndromes (EDS) are a clinically and genetically heterogeneous group of hereditary disorders affecting connective tissue. Among the 13 EDS subtypes described in the latest 2017 classification (Malfait et al., 2017), the hypermobile variant (hEDS) is the most common, accounting for 80–90% of all EDS cases (Tinkle et al., 2017). Individuals presenting joint hypermobility accompanied by symptoms, but not meeting the full diagnostic criteria for hEDS, are now classified under “Hypermobility Spectrum Disorders” (HSD; Carroll, 2023). Patients with hEDS and HSD experience chronic pain, which severely affects their functional capacity and ability to participate socially. These conditions remain poorly understood and insufficiently recognized both medically and socially, which contributes to patient stigmatization and isolation. In this fragile social context, studying pain catastrophizing may help better understand the social responses perceived by patients (e.g., support, punishment), as proposed by the communal coping model. However, no research to date has explored the interactional dimension of catastrophizing among individuals with hEDS and HSD and their caregivers.

Research questions:

  • Is there an association between catastrophizing, social support, and the social responses of caregivers/close others to the chronic pain of patients with hEDS/HSD?
  • How do patients with hEDS/HSD and their close relatives perceive others’ responses to pain and their own responses, respectively?

Design: Cross-sectional mixed-methods observational study (quantitative and qualitative).

Researchers: C. Baeza-Velasco, J. Jothivadivel, R. Jaussaud, F. Jedryka, K. Benistan. 

Affiliated Institutions: LPPS Laboratory, Université Paris Cité; Non-vascular Ehlers–Danlos Syndrome Competence Center, University Hospital of Nancy; Non-vascular Ehlers–Danlos Syndrome Reference Center, Raymond Poincaré Hospital, AP-HP, and Pain Evaluation and Treatment Center, University Hospital of Nîmes.