An observational study in Juvenile Idiopathic Arthritis, sponsored by University Hospital, Clermont-Ferrand. Status unknown at 4 sites in France. Open to participants aged 11 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2023-01-25.
Sponsored by University Hospital, Clermont-Ferrand · Observational
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.
352 studies on the registry are indexed under Arthritis, Juvenile; 92 are open to participants now.
This study's planned enrollment of 45 is below the median of 120 across 113 observational studies indexed under Arthritis, Juvenile.
Browse Arthritis, Juvenile studies →University Hospital, Clermont-Ferrand is the lead sponsor of 841 studies on the registry; 178 are open to participants now.
Counted across the registry records on this site, refreshed daily.
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).
Children:
Parents:
Health care professional:
Exclusion Criteria:
For all participants:
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
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
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.
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.
Time frame: About 1 hour
This study is status unknown, as verified in Dec 2022. You cannot join it, but the record below documents what was studied.
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University Hospital, Clermont-Ferrand