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

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ACTI-SEDh Study – Activity Patterns in Individuals with Hypermobile Ehlers-Danlos Syndrome: Associated Factors and Decision-Making 

Context: Of the 13 subtypes of Ehlers-Danlos Syndrome (EDS) described, the hypermobile subtype (hEDS) is the most common, accounting for 80–90% of all EDS cases. The hEDS phenotype is heterogeneous and multisystemic due to the widespread distribution of collagen throughout the body. However, pain is the most common symptom. Studies have shown that individuals with hEDS experience severe functional impairment, primarily driven by pain and fatigue. This results in a reduced capacity to maintain paid employment, perform household tasks, and engage in social and leisure activities. Consequently, it is essential to identify the factors contributing to functional deterioration in hEDS to minimize the personal and economic impact of the condition. From a cognitive-behavioral perspective, one of the key factors in the overall functioning of patients with chronic pain is their relationship to activity (activities of daily living). Three major trends or activity patterns have been described: avoidance, persistence, and pacing. These patterns can lead to the perpetuation of pain and functional impairment and have been studied in various pain-related conditions. This knowledge has helped provide appropriate care, such as through activity pacing techniques, to support the restoration of functioning in patients. To date, no study has explored the activity-related behavior of individuals with hEDS. 

Objectives: To explore the activity patterns of patients with hEDS (avoidant, persistent, and pacing patterns), the factors associated with these patterns, and the decision-making process of patients regarding activity. 

Design and Method: ACTI-SEDh is a cross-sectional observational study using a mixed-methods approach. For the quantitative part of the study, participants are invited to complete a series of self-report questionnaires assessing activity patterns, clinical variables (e.g., pain, fatigue), psychosocial variables (e.g., quality of life), and sociodemographic data. 

For the qualitative part of the study, a subgroup of participants is invited to take part in a semi-structured interview conducted by a clinical psychologist. 

Affiliated Institutions: LPPS Laboratory, Université Paris Cité; Center of Expertise for Non-Vascular Ehlers-Danlos Syndromes, University Hospital of Nancy; Pain Assessment and Treatment Center, University Hospital of Nîmes; “Living with EDS” Association. 

Researchers: Carolina Baeza-Velasco (PI), David Attali (PhD student), Roland Jaussaud, François Jedryka, Cécile Flahault. 

Funding: Fondation Maladies Rares and The Ehlers-Danlos Society.