Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome
Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome
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.
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.
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