Adolescent Projections During Transition in Prader-Willi Syndrome (APT-WILL)

Toulouse University Hospital

Status: Not yet enrolling

Conditions: Prader-Willi Syndrome

Treatments: Behavioral: Phone interview

Study type: Interventional

Funder types: Other

Identifiers

NCT06279052

RC31/23/0535

Details and patient eligibility

About

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.

Enrollment: 20 estimated patients

Sex: All

Ages: 15 to 20 years old

Volunteers: No Healthy Volunteers

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)

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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20 participants in 1 patient group

Phone interview

Experimental group

Description:

Patients will then be contacted by the investigator to arrange a telephone appointment date. On the day of the telephone appointment, the psychiatry intern will call the patient to conduct the interview which will last between 30 and 60 minutes. At the end of the telephone interview, the patient's participation in the research will end.

Treatment:

Behavioral: Phone interview