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) (SNAPS-JIA)

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.

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.

Study Overview

• Status: Not yet recruiting
• Conditions: Juvenile Idiopathic Arthritis
• Intervention / Treatment: Other: questionnaire

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.

• Study Type: Observational
• Enrollment (Anticipated): 300

Contacts and Locations

• Study Contact: Name: Lise LACLAUTRE; Phone Number: +334 73 754 963; Email: promo_interne_drci@chu-clermontferrand.fr

Study Locations

• France
  • Bordeau, France, 33000
    • CHU Bordeaux Pellegrin
    • Contact: Thierry SHAEVERBEKE
    • Principal Investigator: Thierry SHAEVERBEKE
    • Sub-Investigator: Christophe RICHEZ
  • Boulogne-Billancourt, France, 92104
    • AP-HP
    • Contact: Gilles Hayem
    • Principal Investigator: Gilles Hayem
  • Brest, France, 29200
    • Hôpital de la Cavale blanche
    • Contact: Valérie DEVAUCHELLE-PENSEC
    • Principal Investigator: Valérie DEVAUCHELLE-PENSEC
    • Sub-Investigator: Sandrine JOULIN JOUSSE
  • Clermont-Ferrand, France, 63000
    • CHU de Clermont-Ferrand
    • Principal Investigator: Carine SAVEL
    • Sub-Investigator: Anne Tournadre
    • Sub-Investigator: Sandrine Malochet-Guinamand
  • Metz, France, 57085
    • CHR Metz-Thionville
    • Contact: Didier Poivret
    • Principal Investigator: Didier Poivret
  • Montpellier, France, 34090
    • CHU de Montpellier
    • Contact: Jean David Cohen
    • Principal Investigator: Jean David Cohen
  • Montpellier, France, 34080
    • Association Nationale de Défense contre l'Arthrite Rhumatoïde
    • Contact: Sonia TROPE
    • Principal Investigator: Sonia Trope
  • Nantes, France, 44093
    • Centre Hospitalier Universitaire de Nantes
    • Contact: Pascale Guillot
    • Principal Investigator: Pascale Guillot
    • Sub-Investigator: Christelle DARRIEUTORT
    • Sub-Investigator: Benoît LEGOFF
  • Nice, France, 0600
    • CHU de Nice Hopital Pasteur
    • Contact: Laura Cabane
    • Principal Investigator: Laura Cabane
    • Sub-Investigator: Chami STEMMANN
  • Paris, France, 75011
    • Association KOURIR
    • Contact: Nadine PEZIERE
    • Principal Investigator: Nadine PEZIERE
  • Paris, France, 75013
    • APHP La Pitié Salpêtrière
    • Contact: Bruno FAUTREL
  • Strasbourg, France, 67200
    • CHU de Strasbourg - Hôpital de Hautepierre
    • Contact: Christelle Sordet
    • Principal Investigator: Christelle Sordet
  • Toulouse, France, 31300
    • CHU Toulouse
    • Contact: Bénédicte Jamard
    • Principal Investigator: Bénédicte Jamard
  • Tulle, France, 19000
    • Association France Spondyloarthrite
    • Contact: Delphine Lafarge
    • Principal Investigator: Delphine Lafarge
  • Échirolles, France, 38434
    • CHUGA - Hôpital Sud
    • Contact: Philippe Gaudin
    • Principal Investigator: Philippe Gaudin

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 45 years (ADULT)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

- Patients with juvenile rheumatoid arthritis aged from 18 to 45 years, and their parents

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
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.	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.
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.	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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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 Outcome Measures

Outcome Measure	Measure Description	Time Frame
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
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

Collaborators and Investigators

• Sponsor: University Hospital, Clermont-Ferrand
• Collaborators: Societe Francaise de Rhumatologie
• Investigators: Principal Investigator: Carine SAVEL, CHU de Clermont-Ferrand

Study record dates

Study Major Dates

• Study Start (ANTICIPATED): May 1, 2021
• Primary Completion (ANTICIPATED): February 1, 2022
• Study Completion (ANTICIPATED): June 1, 2022

Study Registration Dates

• First Submitted: March 8, 2021
• First Submitted That Met QC Criteria: March 8, 2021
• First Posted (ACTUAL): March 10, 2021

Study Record Updates

• Last Update Posted (ACTUAL): March 10, 2021
• Last Update Submitted That Met QC Criteria: March 8, 2021
• Last Verified: March 1, 2021

More Information

Terms related to this study

• Keywords: Patient education; Juvenile idiopathic arthritis; Sexual health; Needs assessment
• Additional Relevant MeSH Terms: Immune System Diseases; Autoimmune Diseases; Joint Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Connective Tissue Diseases; Arthritis; Arthritis, Juvenile
• Other Study ID Numbers: RNI 2020 SAVEL

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No