Congenital Diaphragmatic Hernia
Conditions
Keywords
CDH, physical activity and sports, childhood and adolescence, environment sociological, psychological clinical
Brief summary
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.
Interventions
None listed
Sponsors
University Hospital, Lille
APEHDia, a french CDH patient association
Rare Disease Foundation, France
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
12 Years to 18 Years
Healthy volunteers
Yes
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Self-questionnaire (for the subjects) | At the time of inclusion | to collect the level of investment of the subject in their sport participation (from the subject's point of view) |
| Self-questionnaire (for the subject's parents) | At the time of inclusion | to collect the subject's level of involvement in their sport (from the subject's parents' point of view |
| semi-directive interview of the subject | At the time of inclusion | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject (the adolescent) |
| semi-directive interview of the subject's parents | At the time of inclusion | allowing the identification of the dynamics of involvement in physical activities and sports practices, from the point of view of the subject's parents |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| study of the diaphragmatic kinetics by cardiac MRI | At the time of inclusion | 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. |
| Self-questionnaire and interviews (for the subjects) | At the time of inclusion | Analysis of the verbatim of the self-questionnaires and the interviews, with regard to the real physical capacities of the subjects. |
Countries
France
Contacts
CONTACTSébastien MUR, MD
PRINCIPAL_INVESTIGATORSébastien MUR, MD
University Hospital, Lille
Outcome results
None listed