AJILITT: Access to Pediatric Rheumatology Centers for JIA Patients: Factors Associated With Time to Access Pediatric Rheumatology Centers
Study Details
Study Description
Brief Summary
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| 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) |
Other: semi-structured interview
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.
|
| 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) |
Other: semi-structured interview
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.
|
| Health care professionals Physician with experience in the initial management of JIA patients (between symptom onset and first visit with a pediatric rheumatologist) |
Other: semi-structured interview
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.
|
Outcome Measures
Primary Outcome Measures
- Experience and views of barriers and solutions to the referral to pediatric rheumatology center for JIA patients [About 1 hour]
Through semi-structured interviews, the study will reconstruct the referral pathway to the pediatric rheumatology center for JIA patients. For patients and their parents, the interviews will focus on their experiences of the health care system, their feelings about interactions with health professional, their expectations and the elements that led to the parents' decision regarding their child's health. For health care professionals, the interviews will focus on their experience in managing children with JIA (from the symptom onset to the first visit with the pediatric rheumatologist), the difficulties they encountered, and the improvements to be made in training and communication.
Eligibility Criteria
Criteria
Inclusion Criteria:
Children:
-
age > 11 years
-
JIA diagnosed between 4 and 24 months prior to the start of the study
Parents:
- parent of a child with JIA diagnosed between 4 and 24 months prior to the start of the study
Health care professional:
- Physician with experience in the initial management of children with JIA (between symptom onset and first visit with a pediatric rheumatologist).
Exclusion Criteria:
For all participants:
-
Refusal to participate in interviews
-
Presenting a health condition incompatible with an interview
-
Participants with inadequate French to take part in semi-structured interviews
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | CHU de Clermont-Ferrand | Clermont-Ferrand | France | 63000 | |
| 2 | Hospices Civils de Lyon | Lyon | France | ||
| 3 | APHP | Paris | France | ||
| 4 | Hopital Nord Franche-Comté | Trévenans | France |
Sponsors and Collaborators
- University Hospital, Clermont-Ferrand
- Research on Healthcare Performance Lab U1290
Investigators
- Study Director: Aurélie CHAUSSET, University Hospital, Clermont-Ferrand
Study Documents (Full-Text)
None provided.More Information
Publications
- 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.
- 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.
- 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.
- 2022 CHAUSSET AJILITT