Juvenile Idiopahtic Arthritis
Conditions
Keywords
JIA, Support-program,, Register study
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.
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.
Interventions
BEHAVIORALThe 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.
Sponsors
Region Stockholm
Karolinska University Hospital
Karolinska Institutet
Study design
Allocation
NON_RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
The intervention JASP-1 is a support program consisting of seven structured visits the first year following JIA diagnosis
Eligibility
Sex/Gender
ALL
Age
0 Years to 16 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| CHAQ, Disabkids, Physicians global assessment | For one year following JIA diagnosis | 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. |
| CHAQ | Assessed several times during the first year after diagnosis. Values from 0-3 | Childhood Health Assessment Queationnaire |
| Disabkids | Assessed at 3 timepoints during the first year, values between 0-100 | Health Related Quality of Life |
| Phycisians global assessment | During the first year after diagnosis | Assessed at 3 timepoint during the first year after diagnosis. Valued on a VAS scale 0-10 |
Countries
Sweden
Outcome results
None listed