Improving Outcomes for Juvenile Idiopathic Arthritis

Improving Outcomes for Children Newly Diagnosed With Juvenile Idiopathic Arthritis Through a Structured Support Program (JASP-1) - A Longitudinal Register Study

Children and parents often experience uncertainty and stress when juvenile idiopathic arthritis (JIA) is first diagnosed, which creates a need for structured support. Juvenile Idiopathic Support Program (JASP-1) provide patient-and family centered support during the first year after diagnosis. However, little is known about how a support program like JASP-1 can influence outcomes. Therefore, this study aimed to longitudinally examine registry data from children who participated in JASP 1 and to compare the outcomes with registry data from a matched control group.

Study Overview

• Status: Completed
• Conditions: Juvenile Idiopahtic Arthritis
• Intervention / Treatment: Behavioral: The intervention was a one year support program JASP-1

Detailed Description

Methods: The study is a longitudinal register study with data from the Swedish Pediatric Rheumatology Quality Register (PedSRQ). Data included outcome measures from the child and/or the parents as well as clinical information's from the physicians.

• Study Type: Interventional
• Enrollment (Actual): 116
• Phase: Not Applicable

Contacts and Locations

Study Locations

• Sweden
  • Stockholm, Sweden, 17176
    • Karolinska University Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child
• Accepts Healthy Volunteers: No

Description

Inclusion Criteria:

• For the JASP-1: Diagnosed with JIA and have completed the JASP-1.
• For the control group: Diagnosed with JIA at the same clinic as above

Exclusion Criteria:

• No JIA diagnosis
• Change of diagnose during the year
• Do not understand or speak Swedish

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Non-Randomized
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Participating in the Juvenile Arthritis Support Program (JASP-1); Children newly diagnosed with JIA and their parents were invited to participate in the intervention JASP-1. The intervention contains seven structured patient-and family centered visits the first year after JIA diagnose. With more visits close in the beginning.	Behavioral: The intervention was a one year support program JASP-1; Seven structured visits with a patient-and family-centered approach was used in the JASP-1 program, in which children newly diagnosed with JIA and their parents were invited to participate in.
No Intervention: Control group; This arm is a control group consisting of 60 children matched in diagnose, gender and age with the ones in the intervention group. The children and parents in the control group did not receive any intervention. The data was collected from the PedSRQ register.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
CHAQ, Disabkids, Physicians global assessment	56 children received JASP-1and was on 3 timepoints compared with 60 children matched in disease, gender and age.The measures compared is CHAQ including pain, disease impact on overall well-being and school attendance, DISABKIDS, JADAS-71, Physicians global assessment, Number of active joints, Number of joint injections and Pharmacological treatment. Outcomes at 12 months, were analyzed using the non parametric Mann-Whitney U test. For categorical variables differences were analyzed using the chi-square test to compare proportions. Repeated measurement ANOVA was used for calculating differences over time between the two groups. P value < 0.05 was considered statistically significant. Statistical analyses were performed using IBM SPSS Statistics for Windows, version 31.	For one year following JIA diagnosis
CHAQ	Childhood Health Assessment Queationnaire	Assessed several times during the first year after diagnosis. Values from 0-3
Disabkids	Health Related Quality of Life	Assessed at 3 timepoints during the first year, values between 0-100
Phycisians global assessment	Assessed at 3 timepoint during the first year after diagnosis. Valued on a VAS scale 0-10	During the first year after diagnosis

Collaborators and Investigators

• Sponsor: Region Stockholm
• Collaborators: Karolinska University Hospital; Karolinska Institutet

Study record dates

Study Major Dates

• Study Start (Actual): August 15, 2019
• Primary Completion (Actual): February 19, 2026
• Study Completion (Actual): February 19, 2026

Study Registration Dates

• First Submitted: May 26, 2026
• First Submitted That Met QC Criteria: June 15, 2026
• First Posted (Actual): June 22, 2026

Study Record Updates

• Last Update Posted (Actual): June 22, 2026
• Last Update Submitted That Met QC Criteria: June 15, 2026
• Last Verified: May 1, 2026

More Information

Terms related to this study

• Keywords: JIA; Register study; Support-program,
• Other Study ID Numbers: K 2026-0525

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No