NCT05696340

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.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
45

participants targeted

Target at P25-P50 for all trials

Timeline
Completed

Started Oct 2022

Shorter than P25 for all trials

Geographic Reach
1 country

4 active sites

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

October 18, 2022

Completed
2 months until next milestone

First Submitted

Initial submission to the registry

December 22, 2022

Completed
1 month until next milestone

First Posted

Study publicly available on registry

January 25, 2023

Completed
7 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 1, 2023

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 1, 2023

Completed
Last Updated

January 25, 2023

Status Verified

December 1, 2022

Enrollment Period

11 months

First QC Date

December 22, 2022

Last Update Submit

January 12, 2023

Conditions

Juvenile Idiopathic Arthritis

Keywords

qualitative researchaccess to caretime to referralhealth literacy

Outcome Measures

Primary Outcomes (1)

  • 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

Study Arms (3)

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

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

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

Interventions

semi-structured interviewOTHER

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 professionalsJIA patientsParents of JIA patients

Eligibility Criteria

Age11 Years+
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-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).

You may qualify if:

  • 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).

You may not qualify if:

  • 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

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (4)

CHU de Clermont-Ferrand

Clermont-Ferrand, 63000, France

RECRUITING

Hospices Civils de Lyon

Lyon, France

NOT YET RECRUITING

APHP

Paris, France

NOT YET RECRUITING

Hopital Nord Franche-Comté

Trévenans, France

RECRUITING

Related Publications (4)

  • 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.

    PMID: 32940701BACKGROUND

  • 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.

    PMID: 20173199BACKGROUND

  • 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.

    PMID: 30267356BACKGROUND

  • Chausset A, Freychet C, Lohse A, Belot A, Merlin E, Echaubard S, Schott AM, Lachal J. Diagnosis journey for children with juvenile idiopathic arthritis: a qualitative study. Arch Dis Child. 2024 Nov 19;109(12):1003-1009. doi: 10.1136/archdischild-2024-327426.

    PMID: 39174297DERIVED

MeSH Terms

Conditions

Arthritis, Juvenile

Condition Hierarchy (Ancestors)

ArthritisJoint DiseasesMusculoskeletal DiseasesRheumatic DiseasesConnective Tissue DiseasesSkin and Connective Tissue DiseasesAutoimmune DiseasesImmune System Diseases

Study Officials

  • Aurélie CHAUSSET

    University Hospital, Clermont-Ferrand

    STUDY DIRECTOR

Central Study Contacts

Lise LACLAUTRE

CONTACT

334.73.754.963promo_interne_drci@chu-clermontferrand.fr

Study Design

Study Type
observational
Observational Model
OTHER
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

December 22, 2022

First Posted

January 25, 2023

Study Start

October 18, 2022

Primary Completion

September 1, 2023

Study Completion

September 1, 2023

Last Updated

January 25, 2023

Record last verified: 2022-12

Locations

FR(4)