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)

NCT ID: NCT04791189

Last Updated: 2021-03-10

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 300 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2021-05-31
• Study Completion Date: 2022-06-30

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.

Conditions

Juvenile Idiopathic Arthritis

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: RETROSPECTIVE

Study Groups

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.

questionnaire

Intervention Type: OTHER

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.

questionnaire

Intervention Type: OTHER

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

Interventions

questionnaire

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

Intervention Type: OTHER

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

• Minimum Eligible Age: 18 Years
• Maximum Eligible Age: 45 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Societe Francaise de Rhumatologie

OTHER

Sponsor Role: collaborator

University Hospital, Clermont-Ferrand

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Carine SAVEL

Role: PRINCIPAL_INVESTIGATOR

CHU de Clermont-Ferrand

Locations

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

Association KOURIR

Paris, , France

APHP La Pitié Salpétrière

Paris, , France

CHU de Strasbourg - Hôpital de Hautepierre

Strasbourg, , France

CHU Toulouse

Toulouse, , France

Association France Spondyloarthrite

Tulle, , France

Countries

France

Central Contacts

Lise LACLAUTRE

Role: CONTACT

promo_interne_drci@chu-clermontferrand.fr

+334 73 754 963

Facility Contacts

Thierry SHAEVERBEKE

Role: primary

Gilles Hayem

Role: primary

Valérie DEVAUCHELLE-PENSEC

Role: primary

Lise LACLAUTRE

Role: primary

promo_interne_drci@chu-clermontferrand.fr

+33473754963

Philippe Gaudin

Role: primary

Didier Poivret

Role: primary

Sonia TROPE

Role: primary

Jean David Cohen

Role: primary

Pascale Guillot

Role: primary

Laura Cabane

Role: primary

Nadine PEZIERE

Role: primary

Bruno Fautrel

Role: primary

Christelle Sordet

Role: primary

Bénédicte Jamard

Role: primary

Delphine Lafarge

Role: primary

References

Savel C, Chausset A, Berland P, Guiguet-Auclair C, Cabane L, Fautrel B, Gaudin P, Guillot P, Hayem G, Lafarge D, Merlin E, Peziere N, Sordet C, Trope S, Tournadre A, Malochet S, Cohen JD. Survey of adolescents' needs and parents' views on sexual health in juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2023 Sep 5;21(1):95. doi: 10.1186/s12969-023-00884-x.

Reference Type: DERIVED

PMID: 37670340 (View on PubMed)

Other Identifiers

RNI 2020 SAVEL

Identifier Type: -

Identifier Source: org_study_id