The management of patients with Ehlers-Danlos syndrome (EDS) is still underdeveloped in healthcare institutions in France. Although multidisciplinary management through exercise rehabilitation has demonstrated its benefits in many chronic pathologies, it has not been evaluated for EDS. As a result, to date there is no evidence of its effectiveness in patients with EDS. The objective of this study is therefore to objectively evaluate the effectiveness of such a treatment on the different dimensions of these patients' health.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
TREATMENT
Masking
NONE
Enrollment
25
The program takes place over a total period of 9 weeks: for 4 weeks they will be cared for two days a week, then after a week's break, for 4 weeks they will be cared for three days a week for a total of approximately 80 hours of care. The program is multidisciplinary and includes: balneotherapy, ergometry, occupational therapy, gymnastics, physiotherapy, walking, sophrology, yoga as well as different workshops for the therapeutic education of the patient led by several professionals (dieticians, physiotherapists, doctors, psychologists).
Clinique de la Mitterie
Lomme, France
Distance covered in the 6-minute walk test
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Other data from the 6-minute walk test
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Time of an endurance test on a cyclo-ergometer
Time frame: Baseline ; 9 weeks
Area swept by the gravity center during a balance test on a posturological platform
Four balance tests : bipodal with eyes open, bipodal with eyes closed and unipodal with eyes open on the two sides
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Tampa scale for kinesiophobia (questionnaire)
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Brief pain inventory (questionnaire)
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Nijmegen questionnaire
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Multidimensional fatigue inventory (questionnaire)
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
Medical outcome study short form 36 (questionnaire)
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months
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Hospital anxiety and depression scale (questionnaire)
Time frame: 9 weeks before baseline ; Baseline ; 9 weeks ; 15 weeks ; 8 months