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

University Hospital, Toulouse60 enrolled

Overview

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Marfan Syndrome

Interventions

Therapeutic Education ProgramOTHER

* 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

Eligibility

Sex: ALLMin age: 7 YearsMax age: 25 Years

Medical Language ↔ Plain English

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

Locations (1)

UHToulouse

Toulouse, France

Outcomes

Primary Outcomes

quality of life of children and young adults with Marfan

Answer to the question of PedsQL

Time frame: Base line

quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),

Answer to the question of PedsQL

Time frame: 3 months

quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),

Answer to the question of PedsQL

Time frame: 9 months

quality of life of children and young adults with Marfan syndrome after therapeutic education program (ETP),

Answer to the question of PedsQL

Time frame: 12 months

Data from ClinicalTrials.gov

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