What Projections Towards the Future During a Period of Transition? A Qualitative Study of Adolescents With Prader-Willi Syndrome
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Experience of the disease and aspirations regarding the future
研究概览
简要总结
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 15 Years 至 20 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •Refusal of family participation (if minor)
- •Refusal of participation by the patient or his guardian (if of legal age)
研究组 & 干预措施
Phone interview
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.
干预措施: Phone interview (Behavioral)
结局指标
主要结局
Experience of the disease and aspirations regarding the future
时间窗: 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.
次要结局
未报告次要终点