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.
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
Allocation
NON_RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
116
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.
Karolinska University Hospital
Stockholm, Sweden
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.
Time frame: For one year following JIA diagnosis
CHAQ
Childhood Health Assessment Queationnaire
Time frame: Assessed several times during the first year after diagnosis. Values from 0-3
Disabkids
Health Related Quality of Life
Time frame: 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
Time frame: During the first year after diagnosis
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