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
1 other identifier
interventional
116
1 country
1
Brief Summary
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for not_applicable
Started Aug 2019
Longer than P75 for not_applicable
1 active site
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
August 15, 2019
CompletedPrimary Completion
Last participant's last visit for primary outcome
February 19, 2026
CompletedStudy Completion
Last participant's last visit for all outcomes
February 19, 2026
CompletedFirst Submitted
Initial submission to the registry
May 26, 2026
CompletedFirst Posted
Study publicly available on registry
June 22, 2026
CompletedJune 22, 2026
May 1, 2026
6.5 years
May 26, 2026
June 15, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (4)
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
Study Arms (2)
Participating in the Juvenile Arthritis Support Program (JASP-1)
EXPERIMENTALChildren 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.
Control group
NO INTERVENTIONThis 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.
Interventions
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.
Eligibility Criteria
You may qualify if:
- 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
You may not qualify if:
- No JIA diagnosis
- Change of diagnose during the year
- Do not understand or speak Swedish
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Region Stockholmlead
- Karolinska University Hospitalcollaborator
- Karolinska Institutetcollaborator
Study Sites (1)
Karolinska University Hospital
Stockholm, 17176, Sweden
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- NON RANDOMIZED
- Masking
- NONE
- Purpose
- SUPPORTIVE CARE
- Intervention Model
- SINGLE GROUP
- Sponsor Type
- OTHER GOV
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
May 26, 2026
First Posted
June 22, 2026
Study Start
August 15, 2019
Primary Completion
February 19, 2026
Study Completion
February 19, 2026
Last Updated
June 22, 2026
Record last verified: 2026-05
Data Sharing
- IPD Sharing
- Will not share