Improving Outcomes for Children Newly Diagnosed With Juvenile Idiopathic Arthritis Through a Structured Support Program (JASP-1) - A Longitudinal Register Study
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 116
- 试验地点
- 1
- 主要终点
- CHAQ, Disabkids, Physicians global assessment
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 0 Years 至 16 Years（Child）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •For the JASP-1: Diagnosed with JIA and have completed the JASP-
- •For the control group: Diagnosed with JIA at the same clinic as above
排除标准
- •No JIA diagnosis
- •Change of diagnose during the year
- •Do not understand or speak Swedish
研究组 & 干预措施
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.
干预措施: The intervention was a one year support program JASP-1 (Behavioral)
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.
结局指标
主要结局
CHAQ, Disabkids, Physicians global assessment
时间窗: 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
时间窗: Assessed several times during the first year after diagnosis. Values from 0-3
Childhood Health Assessment Queationnaire
Disabkids
时间窗: Assessed at 3 timepoints during the first year, values between 0-100
Health Related Quality of Life
Phycisians global assessment
时间窗: During the first year after diagnosis
Assessed at 3 timepoint during the first year after diagnosis. Valued on a VAS scale 0-10
次要结局
未报告次要终点