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

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RISEDh Study – Understanding Suicidal Risk in Individuals with Hypermobile Ehlers–Danlos Syndrome: A Comparative Mixed-Methods Study

Background:
Suicide is a major public health issue. Approximately 1 million people worldwide die by suicide each year, making it one of the leading causes of death. To prevent such outcomes, identifying vulnerable populations and the risk factors for suicidal behaviors (SB) is a priority. Physical and chronic pain, physical disability, psychological distress, and female sex are well-established risk factors for SB. These characteristics are overrepresented in individuals with hypermobile Ehlers–Danlos syndrome (hEDS). Therefore, exploring suicidality in persons affected by this syndrome should not be overlooked.

Objectives:

  • To examine the frequency of suicidal behaviors (SB) and suicidal ideation (SI; lifetime prevalence) in patients with hEDS, and compare them with those of chronic pain controls (classical EDS, hypermobility spectrum disorders, and chronic low back pain) and healthy controls.

  • To explore sociodemographic, clinical, and psychosocial determinants of SB and SI in individuals with hEDS.

  • To identify the meaning-making process surrounding SB and SI among patients with hEDS.

Method:
RISEDh is a comparative, cross-sectional, mixed-methods observational study. It is an ancillary study of ACTI-SEDh.
In the first phase of the study, participants undergo assessment to screen for mental disorders, including suicidal risk. Clinical, sociodemographic, and psychosocial data are also collected (partly retrieved from the ACTI-SEDh study).
In a second phase, participants with hEDS who have a history of SB or SI will be recontacted and invited to take part in a semi-structured interview for the qualitative component of the study.

Researchers:
Carolina Baeza-Velasco (PI), Jelena Forget (PhD candidate), Philippe Courtet, Roland Jaussaud, François Jedryka, Cécile Flahault, Karelle Benistan.

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

Funding:
The Ehlers-Danlos Society