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| Name | Class |
|---|---|
| Karolinska University Hospital | OTHER |
| Karolinska Institutet | OTHER |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Participating in the Juvenile Arthritis Support Program (JASP-1) | Experimental | 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. |
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| Control group | No Intervention | 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. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| The intervention was a one year support program JASP-1 | Behavioral | 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. |
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Karolinska University Hospital | Stockholm | 17176 | Sweden |
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The intervention JASP-1 is a support program consisting of seven structured visits the first year following JIA diagnosis
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