Access to Pediatric Rheumatology Centers for JIA Patients: Factors Associated With Time to Access Pediatric Rheumatology Centers

Study Overview
=================
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.

Official Title
-----------------
Access to Pediatric Rheumatology Centers for JIA Patients: Factors Associated With Time to Access Pediatric Rheumatology Centers

Conditions
-----------------
Juvenile Idiopathic Arthritis

Intervention / Treatment
-----------------
* Other: semi-structured interview


Participation Criteria
=================
Eligibility 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

Ages Eligible for Study
-----------------
Minimum Age: 11 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| JIA patients<br>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<br>* 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.<br>|
| Parents of JIA patients<br>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<br>* 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.<br>|
| Health care professionals<br>Physician with experience in the initial management of JIA patients (between symptom onset and first visit with a pediatric rheumatologist) | Other: semi-structured interview<br>* 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.<br>|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | 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. 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. | About 1 hour | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
qualitative research, access to care, time to referral, health literacy