Marfan Syndrome
Conditions
Brief summary
This is a before-after, observational, prospective, multicenter cohort study. The study will consist of 2 phases: an initial observational phase of a minimum of 3 months before the Therapeutic Education Program (TEP) intervention, then a phase of evolution analysis of at least 3 months.
Detailed description
During the first observational phase, the quality of life assessment will be carried out 3 months apart without intervention. The data obtained during this first phase will make it possible to characterize the functional impact in patients, to verify the reproducibility of our evaluations, and to evaluate the spontaneous evolution of the parameters over a period of 3 months. During the second phase of evolution analysis, the quality of life will be assessed at 3 month intervals (M9, M12) after the therapeutic Education Program (M6). The comparison between the evolution during the two phases, before and after the TEP will allow us to assess the benefits of the TEP.
Interventions
* needs assessment * educational group workshop * specialized workshops by age group: child / adolescent / transition / adult / entourage / separated parents and in parallel * socio-administrative workshop * individual summary (accompanied or not by his entourage / family) * satisfaction questionnaire
Sponsors
University Hospital, Toulouse
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
7 Years to 25 Years
Inclusion criteria
* Patient aged between 7 and 25 years old with Marfan Syndrome or related according to Ghent criteria * For minors, no oral opposition from the holders of parental authority and consent of the minor. * For adults, no oral opposition collected * Patient affiliated to a social security scheme or equivalent
Exclusion criteria
* Inability of the patient to understand the content of the TEP sessions or the questionnaire about quality of life (non-French speaking, severe intellectual disability) * Patient who has already participated in a TEP session for his pathology. * Protected adult: patient under legal guardianship or curator protection
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| quality of life of children and young adults with Marfan | Base line | Answer to the question of PedsQL |
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | 3 months | Answer to the question of PedsQL |
Countries
France
Outcome results
None listed