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)

Juvenile Idiopathic Arthritis Clinical Trial

— 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.

Clinical Trial Details — Status: Not yet recruiting

Administrative data

• NCT number: NCT04791189
• Other study ID #: RNI 2020 SAVEL
• Status: Not yet recruiting
• Start date: May 2021
• Est. completion date: June 2022

Study information

• Verified date: March 2021
• Source: University Hospital, Clermont-Ferrand
• Contact: Lise LACLAUTRE
• Phone: +334 73 754 963
• Email: promo_interne_drci[@]chu-clermontferrand.fr
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Not yet recruiting
• Enrollment: 300
• Est. completion date: June 2022
• Est. primary completion date: February 2022
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years to 45 Years

Eligibility

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

Related Conditions & MeSH terms

• Arthritis
• Arthritis, Juvenile
• Juvenile Idiopathic Arthritis

Intervention

Other:
• questionnaire
questionnaire to survey the needs of adolescents with juvenile idiopathic arthritis and the views of their parents in the area of sexual health.

Locations

Country	Name	City	State
France	CHU Bordeaux Pellegrin	Bordeau
France	AP-HP	Boulogne-Billancourt
France	Hôpital de La Cavale Blanche	Brest
France	CHU de Clermont-Ferrand	Clermont-Ferrand
France	CHUGA - Hôpital Sud	Échirolles
France	CHR Metz-Thionville	Metz
France	Association Nationale de Défense contre l'Arthrite Rhumatoïde	Montpellier
France	CHU de Montpellier	Montpellier
France	Centre Hospitalier Universitaire de Nantes	Nantes
France	CHU de Nice Hopital Pasteur	Nice
France	APHP La Pitié Salpétrière	Paris
France	Association KOURIR	Paris
France	CHU de Strasbourg - Hôpital de Hautepierre	Strasbourg
France	CHU Toulouse	Toulouse
France	Association France Spondyloarthrite	Tulle

Sponsors (2)

Lead Sponsor	Collaborator
University Hospital, Clermont-Ferrand	Societe Francaise de Rhumatologie

Country where clinical trial is conducted

France, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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) .	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
Secondary	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)	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
Secondary	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).	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