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| Name | Class |
|---|---|
| Societe Francaise de Rhumatologie | OTHER |
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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with juvenile rheumatoid arthritis aged from 18 to 45 years |
|
| |
| Parents of patients with juvenile rheumatoid arthritis aged from 18 to 45 years | Parents of adult patients with JIA
|
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 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. |
|
| 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 |
| 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) . |
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Inclusion Criteria:
Patients :
Parents :
Exclusion Criteria:
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- Patients with juvenile rheumatoid arthritis aged from 18 to 45 years, and their parents
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lise LACLAUTRE | Contact | +334 73 754 963 | promo_interne_drci@chu-clermontferrand.fr |
| Name | Affiliation | Role |
|---|---|---|
| Carine SAVEL | University Hospital, Clermont-Ferrand | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Bordeaux Pellegrin | Bordeau | 33000 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 37670340 | Derived | 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. |
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| 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 |
| AP-HP | Boulogne-Billancourt | 92104 | France |
|
| Hôpital de La Cavale Blanche | Brest | 29200 | France |
|
| CHU de Clermont-Ferrand | Clermont-Ferrand | 63000 | France |
|
| CHUGA - Hôpital Sud | Échirolles | 38434 | France |
|
| CHR Metz-Thionville | Metz | 57085 | France |
|
| Association Nationale de Défense contre l'Arthrite Rhumatoïde | Montpellier | 34080 | France |
|
| CHU de Montpellier | Montpellier | 34090 | France |
|
| Centre Hospitalier Universitaire de Nantes | Nantes | 44093 | France |
|
| CHU de Nice Hopital Pasteur | Nice | 0600 | France |
|
| Association KOURIR | Paris | 75011 | France |
|
| APHP La Pitié Salpétrière | Paris | 75013 | France |
|
| CHU de Strasbourg - Hôpital de Hautepierre | Strasbourg | 67200 | France |
|
| CHU Toulouse | Toulouse | 31300 | France |
|
| Association France Spondyloarthrite | Tulle | 19000 | France |
|
| ID | Term |
|---|---|
| D001171 | Arthritis, Juvenile |
| ID | Term |
|---|---|
| D001168 | Arthritis |
| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |
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