What Projections Towards the Future During a Period of Transition? A Qualitative Study of Adolescents With Prader-Willi Syndrome
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Prader-Willi Syndrome
- Sponsor
- University Hospital, Toulouse
- Enrollment
- 20
- Locations
- 1
- Primary Endpoint
- Experience of the disease and aspirations regarding the future
- Status
- Not yet recruiting
- Last Updated
- 2 years ago
Overview
Brief Summary
Single-center, cross-sectional qualitative study seeking to collect the experience of adolescence and the transition to adulthood of people affected by Prader-Willi syndrome in a population. To do this, the present will carry out a qualitative study with a reflexive thematic analysis of the data collected through semi-structured interviews using an interview guide.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Patients with genetically confirmed Prader-Willi syndrome
- •Patients affiliated or beneficiaries of a social security system
- •Patients known and followed by the reference center, presenting sufficient intellectual skills to answer the interview questions
Exclusion Criteria
- •Refusal of family participation (if minor)
- •Refusal of participation by the patient or his guardian (if of legal age)
Outcomes
Primary Outcomes
Experience of the disease and aspirations regarding the future
Time Frame: 1 hour
The main objective of this study is to explore their experience of the disease and their aspirations regarding their future in a population of older adolescents and young adults with Prader-Willi syndrome. A questionnaire created by the clinical investigator containing personal questions will be applied to all patients. There is no scale.