Prader-Willi Syndrome
Conditions
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.
Interventions
BEHAVIORALPhone interview
Phone interview during which the experience of the transition to adulthood among adolescents and young adults with Prader Willi Syndrome will be retrieved
Sponsors
University Hospital, Toulouse
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
15 Years to 20 Years
Healthy volunteers
No
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)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Experience of the disease and aspirations regarding the future | 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. |
Countries
France
Contacts
Primary ContactGrégoire BENVEGNU
Outcome results
None listed