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. (SNAPS-JIA)

University Hospital, Clermont-Ferrand

Status: Unknown

Conditions: Juvenile Idiopathic Arthritis

Treatments: Other: questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT04791189

RNI 2020 SAVEL

Details and patient eligibility

About

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.

Full description

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.

The material necessary for the study (invitation letter + "patients"/"parents"-information letters + paper questionnaires for both surveys + pre-stamped letters) will be in paper format for hospital centres. These centres will ensure the follow-up of the study.

The invitation to participate in the survey by mailing or newsletter or association website will be made by the heads of patient associations.

Enrollment: 300 estimated patients

Sex: All

Ages: 18 to 45 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

Patients :

• 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 16.
• • 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 :

• 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.

Exclusion criteria

• Persons opposing participation in the study. The study information letters will specify that participation is consent to participate in the study.
• Protected persons

Trial design

300 participants in 2 patient groups

Patients with juvenile rheumatoid arthritis aged from 18 to 45 years

Description:

* Major male or female patient \[18 to 45 years of age\] with juvenile idiopathic arthritis reported before the age of 16. * - 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.

Treatment:

Other: questionnaire

Parents of patients with juvenile rheumatoid arthritis aged from 18 to 45 years

Description:

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.

Treatment:

Other: questionnaire