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

Study Overview
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Brief Summary
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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
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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.

Official Title
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Effect on the Quality of Life of a Therapeutic Education Program in Patients With Marfan Syndrome: an Observational, Prospective and Multicenter Study

Conditions
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Marfan Syndrome

Intervention / Treatment
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* Other: Therapeutic Education Program


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 7 Years
Maximum Age: 25 Years

Sexes Eligible for Study
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All

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| therapeutic Education Program<br>individual and group sessions will be set up with educational workshops specialized by age group (child / adolescent / transition / adult / entourage / parents), socio-administrative workshops, etc. The objectives will be adapted to each age group and to each patient individually. | Other: Therapeutic Education Program<br>* 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<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| quality of life of children and young adults with Marfan | Answer to the question of PedsQL | Base line | 
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 3 months | 
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 9 months | 
| quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP), | Answer to the question of PedsQL | 12 months |