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)

NCT04791189 | Unknown

• 1 other identifier: RNI 2020 SAVEL
• Study Type: observational
• Target: 300
• Locations: 1 country
• Sites: 15

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.

Conditions

Juvenile Idiopathic Arthritis

Keywords

Juvenile idiopathic arthritis; Sexual health; Patient education; Needs assessment

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (2)

• 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).

  Day 1

Study Arms (2)

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

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

Interventions

questionnaire 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; Patients with juvenile rheumatoid arthritis aged from 18 to 45 years

Eligibility Criteria

• Age: 18 Years - 45 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

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

You may qualify if:

• 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
• 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.

You may not qualify if:

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

Sponsors & Collaborators

• University Hospital, Clermont-Ferrand: lead
• Societe Francaise de Rhumatologie: collaborator

Study Sites (15)

CHU Bordeaux Pellegrin

Bordeau, 33000, France

Location

AP-HP

Boulogne-Billancourt, 92104, France

Location

Hôpital de La Cavale Blanche

Brest, 29200, France

Location

CHU de Clermont-Ferrand

Clermont-Ferrand, 63000, France

Location

CHUGA - Hôpital Sud

Échirolles, 38434, France

Location

CHR Metz-Thionville

Metz, 57085, France

Location

Association Nationale de Défense contre l'Arthrite Rhumatoïde

Montpellier, 34080, France

Location

CHU de Montpellier

Montpellier, 34090, France

Location

Centre Hospitalier Universitaire de Nantes

Nantes, 44093, France

Location

CHU de Nice Hopital Pasteur

Nice, 0600, France

Location

Association KOURIR

Paris, 75011, France

Location

APHP La Pitié Salpétrière

Paris, 75013, France

Location

CHU de Strasbourg - Hôpital de Hautepierre

Strasbourg, 67200, France

Location

CHU Toulouse

Toulouse, 31300, France

Location

Association France Spondyloarthrite

Tulle, 19000, France

Location

Related Publications (1)

• 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.

  PMID: 37670340 DERIVED

MeSH Terms

Conditions

Arthritis, Juvenile

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Arthritis; Joint Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Connective Tissue Diseases; Skin and Connective Tissue Diseases; Autoimmune Diseases; Immune System Diseases

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Carine SAVEL

  CHU de Clermont-Ferrand

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Lise LACLAUTRE

CONTACT

+334 73 754 963; promo_interne_drci@chu-clermontferrand.fr

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 8, 2021
• First Posted: March 10, 2021
• Study Start: May 1, 2021
• Primary Completion: February 1, 2022
• Study Completion: June 1, 2022
• Last Updated: March 10, 2021

Record last verified: 2021-03

Locations

FR (15)