Clinical trial NCT04791189: 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)
Official title: 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.
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Juvenile Idiopathic Arthritis
Keywords: Juvenile idiopathic arthritis
Sexual health
Patient education
Needs assessment
Lead sponsor: University Hospital, Clermont-Ferrand
Sponsor class: OTHER
Collaborators: name: Societe Francaise de Rhumatologie
First posted: 2021-03-10
Enrollment: 300
Sex: ALL
Minimum age (years): 18
Maximum age (years): 45
Standard ages: ADULT
Accepts healthy volunteers: no
Observational model: CASE_ONLY
Time perspective: RETROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: - Patients with juvenile rheumatoid arthritis aged from 18 to 45 years, and their parents

Brief summary: 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.

Detailed 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.

Eligibility criteria: 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

Primary outcomes:
measure: 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) .
timeFrame: Day 1
Secondary outcomes:
measure: 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)
timeFrame: Day 1
measure: 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).
timeFrame: Day 1
Other outcomes:
Locations:
city: Bordeau
country: France
facility: CHU Bordeaux Pellegrin
city: Boulogne-Billancourt
country: France
facility: AP-HP
city: Brest
country: France
facility: Hôpital de La Cavale Blanche
city: Clermont-Ferrand
country: France
facility: CHU de Clermont-Ferrand
city: Metz
country: France
facility: CHR Metz-Thionville
city: Montpellier
country: France
facility: Association Nationale de Défense contre l'Arthrite Rhumatoïde
city: Montpellier
country: France
facility: CHU de Montpellier
city: Nantes
country: France
facility: Centre Hospitalier Universitaire de Nantes
city: Nice
country: France
facility: CHU de Nice Hopital Pasteur
city: Paris
country: France
facility: Association KOURIR
city: Paris
country: France
facility: APHP La Pitié Salpétrière
city: Strasbourg
country: France
facility: CHU de Strasbourg - Hôpital de Hautepierre
city: Toulouse
country: France
facility: CHU Toulouse
city: Tulle
country: France
facility: Association France Spondyloarthrite
city: Échirolles
country: France
facility: CHUGA - Hôpital Sud
Study officials:
affiliation: CHU de Clermont-Ferrand
name: Carine SAVEL
role: PRINCIPAL_INVESTIGATOR
References: