NCT06284616

JASP-1 for Children Recently Diagnosed and Their Parents

Benefits of a Juvenile Arthritis Support Program (JASP-1) for Children Recently Diagnosed With Juvenile Idiopathic Arthritis (JIA) and Their Parents

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 82 (actual)
• Sponsor: Region Stockholm · Other Government
• Sex: All
• Age: 1 Year – 16 Years
• Healthy volunteers: Not accepted

Summary

To implement and evaluate a patient-and family-centered Juvenile Arthritis Support Program during one year (JASP-1) for children recently diagnosed with JIA and their parents and after 12 months compare satistaction with care and health outcomes with a control group receiving standard care.

Detailed description

Children diagnosed with JIA (n=50) and their parents were offered the opportunity to participate in the JASP-1 from the time of diagnosis and the following year. One year after the JIA diagnosis, the children and/or their parents were invited to answer a study-specific questionnaire comprising 16 questions. The questionnaire assessed their experiences with the information, communication, participation, and emotional support they had received during the first year with JIA. In order to compare outcomes, the questionnaire was answered by both participants in JASP-1 and patients and parents receiving standard care (n=25). One example of a question is; If you asked questions to the health care professionals, did you get answers that you understood? Response alternatives range from "No, not at all" to "Yes, Completely" ona 5-point Likert scale. In Swedish Pediatric Rheumatology Quality Register (PedSRQ) information about treatment, disease- and joint activity (registered by Medical doctor), and Patient Reported Outcome Measures (PROM), are measured. The total Child Health Activity Questionnaire (CHAQ-score), as well as active joints and treatment at 12 months was registered in the PedSRQ and analyzed. The study specific questionnaire measuring patient satisfaction has been developed in collaboration with the Swedish Municipalities and County councils. Experimental and descriptive analyses will be performed using software for statistical analysis, SPSS. Distributions of responses will be calculated in percentage. Differences in proportions between groups will be determined by performing chi-square tests.

Conditions

• JIA
• Support Program
• Patient Satisfaction
• Patient Outcome Assessment

Interventions

Type	Name	Description
BEHAVIORAL	JASP-1	patients following the Juvenile Arthritis Support Program at the Pediatric Rheumatology Clinic

Timeline

• Start date: 2019-08-15
• Primary completion: 2023-04-15
• Completion: 2023-12-31
• First posted: 2024-02-29
• Last updated: 2024-03-06

Locations

1 site across 1 country: Sweden