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| Name | Class |
|---|---|
| Research on Healthcare Performance Lab U1290 | OTHER |
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JIA patients, their parents, and the health care professionals experience the complexity of the initial care pathway. The aim of the study is to explore the referral pathway to access pediatric rheumatology centers for JIA patients. The exploration will aim to identify the barriers and facilitators of referral, based on the conceptual framework of the health literacy. The investigators will conduct a qualitative study using semi-structured interviews. The perspectives of parents/children/health care professionals will be crossed to enrich the data.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| JIA patients | Children diagnosed with JIA between 4 and 24 months before the start of the study, treated and followed in a pediatric rheumatology center (old enough to answer the questions) |
| |
| Parents of JIA patients | Parents of a child diagnosed with JIA between 4 and 24 months prior to the start of the study (treated and followed in a pediatric rheumatology center) |
| |
| Health care professionals | Physician with experience in the initial management of JIA patients (between symptom onset and first visit with a pediatric rheumatologist) |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| semi-structured interview | Other | Subjects will be recruited in a purposive, non-randomized manner. Data will be collected to obtain a sufficient diversity of perspectives on the topic, while maintaining sufficient homogeneity for analysis. The number of participants cannot be determined in advance; it will be determined after data saturation. |
| Measure | Description | Time Frame |
|---|---|---|
| Experience and views of barriers and solutions to the referral to pediatric rheumatology center for JIA patients | Through semi-structured interviews, the study will reconstruct the referral pathway to the pediatric rheumatology center for JIA patients.
| About 1 hour |
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Inclusion Criteria:
Children:
Parents:
- parent of a child with JIA diagnosed between 4 and 24 months prior to the start of the study
Health care professional:
Exclusion Criteria:
For all participants:
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Children, adolescents, their parents, and the health care professionnals who have experienced the initial care pathway for JIA (between symptom onset and first visit with a pediatric rheumatologist).
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lise LACLAUTRE | Contact | 334.73.754.963 | promo_interne_drci@chu-clermontferrand.fr |
| Name | Affiliation | Role |
|---|---|---|
| Aurélie CHAUSSET | University Hospital, Clermont-Ferrand | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU de Clermont-Ferrand | Recruiting | Clermont-Ferrand | 63000 | France |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 32940701 | Background | Chausset A, Pereira B, Echaubard S, Merlin E, Freychet C. Access to paediatric rheumatology care in juvenile idiopathic arthritis: what do we know? A systematic review. Rheumatology (Oxford). 2020 Dec 1;59(12):3633-3644. doi: 10.1093/rheumatology/keaa438. | |
| 20173199 | Background | Davies K, Cleary G, Foster H, Hutchinson E, Baildam E; British Society of Paediatric and Adolescent Rheumatology. BSPAR Standards of Care for children and young people with juvenile idiopathic arthritis. Rheumatology (Oxford). 2010 Jul;49(7):1406-8. doi: 10.1093/rheumatology/kep460. Epub 2010 Feb 19. No abstract available. |
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| Hospices Civils de Lyon | Not yet recruiting | Lyon | France |
|
| APHP | Not yet recruiting | Paris | France |
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| Hopital Nord Franche-Comté | Recruiting | Trévenans | France |
|
| 30267356 | Background | Scott C, Chan M, Slamang W, Okong'o L, Petty R, Laxer RM, Katsicas MM, Fredrick F, Chipeta J, Faller G, Pileggi G, Saad-Magalhaes C, Wouters C, Foster HE, Kubchandani R, Ruperto N, Russo R. Juvenile arthritis management in less resourced countries (JAMLess): consensus recommendations from the Cradle of Humankind. Clin Rheumatol. 2019 Feb;38(2):563-575. doi: 10.1007/s10067-018-4304-y. Epub 2018 Sep 28. |
| 39174297 | Derived | Chausset A, Freychet C, Lohse A, Belot A, Merlin E, Echaubard S, Schott AM, Lachal J. Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study. Arch Dis Child. 2024 Nov 19;109(12):1003-1009. doi: 10.1136/archdischild-2024-327426. |
| 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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