Patient Education Program and Ehlers-Danlos Syndrome (PREDUSED)

Civil Hospices of Lyon

Status: Completed

Conditions: Hypermobility Type Ehlers-Danlos Syndrome

Treatments: Other: patient education program

Study type: Observational

Funder types: Other

Identifiers

NCT02817490

D21775

Details and patient eligibility

About

The Ehlers-Danlos Syndrome (SED) comprises a group of clinically and genetically heterogeneous, inherited connective tissue diseases. The hypermobility type is the most frequent. It is characterized by a generalized joint hypermobility and a hyperextension skin.

Chronic pain syndrome is often present. Its psychological impact can be significant (anxiety, depression, impact on the quality of life of the patients). The disease also requires changes and a permanent adaptability (coping). It can lead to feelings of isolation and misunderstanding.

The French association of the Ehlers-Danlos Syndromes and the rehabilitation center of the 'Croix-Rouge Française des Massues' propose a patient education program for the patients with a hypermobility type SED (the PrEduSED program). This education program is open to patients and their caregivers located in France.

The research hypothesis is that the PrEduSED program improves their coping and reduces patient anxiety at 6 months (these are the two clinical criteria on which the PrEduSED could have the most impact, given the results of the first sessions).

Enrollment: 28 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria:

Patients

• adults (>18 years)
• hypermobility type Ehlers-Danlos Syndrome
• participating to one education session during the study period

Caregivers

• adults (>18 years)
• caregivers of patients with hypermobility type Ehlers-Danlos Syndrome
• participating to one education session during the study period

Trial design

28 participants in 2 patient groups

Patients with hypermobility type Ehlers-Danlos Syndrome

Description:

Patients with hypermobility type Ehlers-Danlos Syndrome participating to one out of the three patient education sessions included in the study.

Treatment:

Other: patient education program

Caregivers

Description:

Caregivers participating to one out of the three patient education sessions included in the study.

Treatment:

Other: patient education program