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

January 12, 2023 updated by: University Hospital, Clermont-Ferrand
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.

Study Overview

Status

Recruiting

Conditions

Intervention / Treatment

Study Type

Observational

Enrollment (Anticipated)

45

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • France
      • Clermont-Ferrand, France, 63000
        • Recruiting
        • CHU de Clermont-Ferrand
        • Principal Investigator:
          • Etienne MERLIN
        • Sub-Investigator:
          • Stephane ECHAUBARD
      • Lyon, France
        • Not yet recruiting
        • Hospices Civils de Lyon
      • Paris, France
        • Not yet recruiting
        • APHP
        • Principal Investigator:
          • Caroline FREYCHET
      • Trévenans, France
        • Recruiting
        • Hôpital Nord Franche-Comté
        • Principal Investigator:
          • Anne LOHSE

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

11 years and older (Child, Adult, Older Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Non-Probability Sample

Study Population

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).

Description

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 Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Observational Models: Other
  • Time Perspectives: Other

Cohorts and Interventions

Group / Cohort
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.

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
Time Frame: 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.
About 1 hour

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University Hospital, Clermont-Ferrand

Collaborators

Research on Healthcare Performance Lab U1290

Investigators

  • Study Director: Aurélie CHAUSSET, University Hospital, Clermont-Ferrand

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

October 18, 2022

Primary Completion (Anticipated)

September 1, 2023

Study Completion (Anticipated)

September 1, 2023

Study Registration Dates

First Submitted

December 22, 2022

First Submitted That Met QC Criteria

January 12, 2023

First Posted (Actual)

January 25, 2023

Study Record Updates

Last Update Posted (Actual)

January 25, 2023

Last Update Submitted That Met QC Criteria

January 12, 2023

Last Verified

December 1, 2022

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 2022 CHAUSSET AJILITT

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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