Survey on the Expectations of Adolescents With Juvenile Idiopathic Arthritis (JIA) Regarding Knowledge and Communication With Health Care Professionals in the Field of Sexual Health, and Their Parents' Views on the Subject.
试验速览
- 阶段
- 不适用
- 发起方
- 入组人数
- 300
- 试验地点
- 15
- 主要终点
- Responses of JIA patients to a questionnaire on their expectations during adolescence regarding knowledge and communication with health professionals in the field of sexual health ("patient needs assessment" questionnaire) .
研究概览
简要总结
Sexual health is a legitimate area to explore in the care of these patients, as it has such an impact on quality of life. However, addressing sexual health in a situation of chronic disease confronts the double societal taboo of disease and sexuality. Health professionals are uncomfortable because they are not trained to talk about the subject, especially in the presence of parents and with a teenager they have watched grow up.
In this context, a needs survey among juvenile idiopathic arthritis (JIA) patients and the point of view of their parents in the field of sexual health seems necessary.
Main objective: To determine the expectations of adolescents (aged 10-19 years) with juvenile idiopathic arthritis regarding knowledge and communication with health care professionals in the field of sexual health.
详细描述
This study is non-interventional, multi-centre and does not change current practice.
It will begin with the construction in a multidisciplinary team of two "needs assessment" questionnaires, the first for adult patients who have suffered from JIA, the second for their parents.
They will be drawn up by three sexologists, two rheumatologists, a pediatrician, a nurse from UTEP, a biostatistician, a statistician specializing in questionnaire metrology, two patients with JIA, two parents of JIA patients, and the Director of the ANDAR patient association.
These "needs assessment" questionnaires, entirely anonymous, will be composed of closed, Likert scale or semi-open questions.
The questionnaires will be implemented under RedCap° for patient associations.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Only
- 时间视角
- Retrospective
入排标准
- 年龄范围
- 18 Years 至 45 Years（Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Patients with juvenile rheumatoid arthritis aged from 18 to 45 years
- •- Major male or female patient [18 to 45 years of age] with juvenile idiopathic arthritis reported before the age of
- •- Able to understand and complete the questionnaire online (speaking and reading French, with an internet connection for completion via RedCap°). ¬
- •- Able to give informed consent to participate
- •- Involving one's parents in the survey is not a prerequisite for inclusion.
- •Parents of patients with juvenile rheumatoid arthritis aged from 18 to 45 years
- •- Parents of adult patients with JIA
- •- Parents able to understand and complete the questionnaire online (speaking and reading French, having an internet connection for completion via Red Cap°).
- •- Able to give informed consent to participate
- •- The parents must have been in charge of the patient as a teenager.
排除标准
- •Persons opposing participation in the study. The study information letters will specify that participation is consent to participate in the study.
- •Protected persons
结局指标
主要结局
Responses of JIA patients to a questionnaire on their expectations during adolescence regarding knowledge and communication with health professionals in the field of sexual health ("patient needs assessment" questionnaire) .
时间窗: Day 1
Responses of JIA patients to a questionnaire on their expectations during adolescence regarding knowledge and communication with health professionals in the field of sexual health ("patient needs assessment" questionnaire)
次要结局
- Responses of JIA patients to a questionnaire on their expectations during adolescence regarding knowledge and communication with health professionals in the field of sexual health ("patient needs assessment" questionnaire)(Day 1)
- Responses of parents of JIA patients to a questionnaire on their child's assumed expectations during adolescence regarding knowledge and communication with health professionals in the field of sexual health ("parent needs assessment" questionnaire).(Day 1)