Engagement in Physical Activities and Sports in Adolescents With Diaphragmatic Hernia

Study Overview
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Brief Summary
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The objective is to understand how a population of adolescents - who have undergone diaphragm surgery within their first month of life (i.e. subjects who have been carriers of a rare impacting disease such as congenital diaphragmatic hernia (CDH)) - engages in physical and sports activities and what can be the hindering factors as well as the factors facilitating these practices. Based on self-questionnaires and semi-structured interviews, this research is a qualitative research in the field of human and social sciences. The qualitative survey will make it possible to report on the experience of the disease of children and parents; in parallel, a complete medical evaluation of the subjects (clinical and para-clinical) will be carried out. The analysis of the verbatim of the self-questionnaires and interviews with regard to the real physical capacities of the subjects, will be discussed.

Official Title
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Identification of Obstacles and Facilitators to the Engagement in Physical and Sports Activities in a Population of Adolescents Operated on for a Diaphragmatic Hernia

Conditions
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Congenital Diaphragmatic Hernia

Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Child/adolescent having undergone surgery for CDH in the first month of life, aged 12 to 18 years; absence of polypathology (i.e. diaphragmatic hernia not associated with another pathology); follow-up at the CDH reference centre, Lille site Written consent from both parents allowing the collection of data from the child/adolescent Written consent from the parent(s) agreeing to participate in the study by answering the questionnaires and the individual interview, for themselves and for their child Possibility of accessing equipment to conduct a video-conference interview if necessary. Exclusion Criteria: Parents or child/adolescent not understanding French Parents under guardianship or child under legal protection

Ages Eligible for Study
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Minimum Age: 12 Years
Maximum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Adolescents who had CDH surgery in the first month of life,<br>without any other pathology, now aged 12-18 and followed up at the CDH Lille Reference Center | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Self-questionnaire (for the subjects) | to collect the level of investment of the subject in their sport participation (from the subject's point of view) | At the time of inclusion | 
| Self-questionnaire (for the subject's parents) | to collect the subject's level of involvement in their sport (from the subject's parents' point of view | At the time of inclusion | 
| semi-directive interview of the subject | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject (the adolescent) | At the time of inclusion | 
| semi-directive interview of the subject's parents | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject's parents | At the time of inclusion | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| study of the diaphragmatic kinetics by cardiac MRI | Complete clinical examination of the subjects and detailed paraclinical evaluation according to the recommendations of the PNDS with the addition of a sequence during the cardiac MRI allowing the study of the diaphragmatic kinetics. | At the time of inclusion | 
| Self-questionnaire and interviews (for the subjects) | Analysis of the verbatim of the self-questionnaires and the interviews, with regard to the real physical capacities of the subjects. | At the time of inclusion | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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CDH, physical activity and sports, childhood and adolescence, environment sociological, psychological clinical