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

Juvenile Idiopathic Arthritis Clinical Trial

— AJILITT  

Official title:

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

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT05696340
• Other study ID #: 2022 CHAUSSET AJILITT
• Status: Recruiting
• Start date: October 18, 2022
• Est. completion date: September 2023

Study information

• Verified date: December 2022
• Source: University Hospital, Clermont-Ferrand
• Contact: Lise LACLAUTRE
• Phone: 334.73.754.963
• Email: promo_interne_drci[@]chu-clermontferrand.fr
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 45
• Est. completion date: September 2023
• Est. primary completion date: September 2023
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 11 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Arthritis, Juvenile
• Juvenile Idiopathic Arthritis

Intervention

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.

Locations

Country	Name	City	State
France	CHU de Clermont-Ferrand	Clermont-Ferrand
France	Hospices Civils de Lyon	Lyon
France	APHP	Paris
France	Hopital Nord Franche-Comté	Trévenans

Sponsors (2)

Lead Sponsor	Collaborator
University Hospital, Clermont-Ferrand	Research on Healthcare Performance Lab U1290

Country where clinical trial is conducted

France, 

References & Publications (3)

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. — View Citation

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. — View Citation

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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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