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

Recruiting

• Conditions: Juvenile Idiopathic Arthritis
• Interventions: Other: semi-structured interview

• Registration Number: NCT05696340
• Lead Sponsor: University Hospital, Clermont-Ferrand

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.

Detailed Description

Not available

Study Timeline

• Study Start: 2022-10-18
• Status Verified: 2022-12
• Study First Submitted: 2022-12-22
• Study First Submitted QC: 2023-01-12
• Last Update Submitted: 2023-01-12
• Study First Posted: 2023-01-25
• Last Update Posted: 2023-01-25
• Primary Completion: 2023-09
• Study Completion: 2023-09

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 45

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
JIA patients	semi-structured interview	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	semi-structured interview	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	semi-structured interview	Physician with experience in the initial management of JIA patients (between symptom onset and first visit with a pediatric rheumatologist)

Primary Outcome Measures

Name	Time	Method
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.

Trial Locations

Locations (4)

CHU de Clermont-Ferrand; 🇫🇷 Clermont-Ferrand, France

Hopital Nord Franche-Comté; 🇫🇷 Trévenans, France

Hospices Civils de Lyon; 🇫🇷 Lyon, France

APHP; 🇫🇷 Paris, France