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Abstract：
BACKGROUND: Medical treatment for children with Juvenile Idiopathic Arthritis (JIA) has improved radically since the development of biological disease-modifying antirheumatic drugs. However, children suffer from pain and anxiety, and parents often experience loneliness and lack of support. Some parents reported that information provided at the time their child was diagnosed could be difficult to assimilate. Therefore, the aim of this study was to develop a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with JIA and their parents. Moreover, the aim was to explore patients´ and parents´ experiences with JASP-1 and its potential impact on patients´ physical health.
METHODS: JASP-1 included seven patient- and family-centered clinical visit from time of diagnose and one year ahead. Data were collected from a study-specific questionnaire answered by children and their parents after participation in JASP-1 and from the pediatric rheumatology register. The study-specific questionnaire explored participants´ experience with the care they received during their first year with JIA. Registry and questionnaire data from the intervention (JASP-1) group was compared to a control group.
RESULTS: The analysis revealed that children and parents who completed JASP-1 were more satisfied with the care they had received during their first year with JIA than the control group. The results also showed that children who completed JASP-1 were assessed as having better overall health after 12 months, than children in the control group (JASP-1 = mean 4.33, 95% Confidence Interval (CI) 4.17 - 4.46), (Control = mean 3.68, 95% CI 3.29 - 4.06), (p = 0.002). Moreover, children in the JASP-1 group had less disease impact on daily life (JASP-1 = mean 0.15, 95% CI 0.07 - 0.24) (Control = mean 0.40, 95% CI 0.13 - 0.67), (p = 0.017) and less active joints than the control group (JASP-1 = mean 0.62, 95% CI 0.35 - 1.58), (Control = mean 0.87, 95% CI 0.18 - 1.56), (p = 0.054).
CONCLUSIONS: A support program like JASP-1 could be an effective way of not only supporting children newly diagnosed with JIA and their parents psychologically but may also increase children\'s overall physical health and improve quality of care within pediatric rheumatology.
BACKGROUND: Retrospectively registered in ClinicalTrials.gov, the 13th of February with ID NCT06284616.
METHODS: JASP-1 included seven patient- and family-centered clinical visit from time of diagnose and one year ahead. Data were collected from a study-specific questionnaire answered by children and their parents after participation in JASP-1 and from the pediatric rheumatology register. The study-specific questionnaire explored participants´ experience with the care they received during their first year with JIA. Registry and questionnaire data from the intervention (JASP-1) group was compared to a control group.
RESULTS: The analysis revealed that children and parents who completed JASP-1 were more satisfied with the care they had received during their first year with JIA than the control group. The results also showed that children who completed JASP-1 were assessed as having better overall health after 12 months, than children in the control group (JASP-1 = mean 4.33, 95% Confidence Interval (CI) 4.17 - 4.46), (Control = mean 3.68, 95% CI 3.29 - 4.06), (p = 0.002). Moreover, children in the JASP-1 group had less disease impact on daily life (JASP-1 = mean 0.15, 95% CI 0.07 - 0.24) (Control = mean 0.40, 95% CI 0.13 - 0.67), (p = 0.017) and less active joints than the control group (JASP-1 = mean 0.62, 95% CI 0.35 - 1.58), (Control = mean 0.87, 95% CI 0.18 - 1.56), (p = 0.054).
CONCLUSIONS: A support program like JASP-1 could be an effective way of not only supporting children newly diagnosed with JIA and their parents psychologically but may also increase children\'s overall physical health and improve quality of care within pediatric rheumatology.
BACKGROUND: Retrospectively registered in ClinicalTrials.gov, the 13th of February with ID NCT06284616.
摘要：
背景：自从生物疾病缓解抗风湿药物的开发以来，青少年特发性关节炎（JIA）儿童的药物治疗得到了根本改善。然而,儿童遭受痛苦和焦虑，父母经常感到孤独和缺乏支持。一些父母报告说，他们的孩子被诊断时提供的信息可能很难吸收。因此,这项研究的目的是为最近诊断为JIA的儿童及其父母制定青少年关节炎支持计划(JASP-1).此外，目的是探讨患者和父母使用JASP-1的经历及其对患者身体健康的潜在影响。
方法：JASP-1包括从诊断时间和提前一年开始的7次以患者和家庭为中心的临床就诊。数据是从参加JASP-1后儿童及其父母回答的研究特定问卷以及儿科风湿病登记簿中收集的。针对研究的问卷探讨了参与者在JIA第一年接受护理的经验。将干预（JASP-1）组的注册表和问卷数据与对照组进行比较。
结果：分析表明，完成JASP-1的儿童和父母对他们在使用JIA的第一年所接受的护理比对照组更满意。结果还表明，完成JASP-1的儿童在12个月后被评估为整体健康状况更好，对照组的儿童（JASP-1=平均4.33，95%置信区间（CI）4.17-4.46），(对照=平均值3.68，95%CI3.29-4.06)，（p=0.002）。此外，JASP-1组的儿童对日常生活的疾病影响较小（JASP-1=平均0.15，95％CI0.07-0.24）（对照=平均0.40，95％CI0.13-0.67），（p=0.017），活动关节少于对照组（JASP-1=平均0.62，95％CI0.35-1.58），（对照=平均0.87，95%CI0.18-1.56），（p=0.054）。
结论：像JASP-1这样的支持计划可能是一种有效的方法，不仅可以在心理上支持新诊断为JIA的儿童及其父母，而且还可以增加儿童的整体身体健康并改善儿科风湿病的护理质量。
背景：在ClinicalTrials.gov中回顾性注册，2月13日，ID为NCT06284616。
方法：JASP-1包括从诊断时间和提前一年开始的7次以患者和家庭为中心的临床就诊。数据是从参加JASP-1后儿童及其父母回答的研究特定问卷以及儿科风湿病登记簿中收集的。针对研究的问卷探讨了参与者在JIA第一年接受护理的经验。将干预（JASP-1）组的注册表和问卷数据与对照组进行比较。
结果：分析表明，完成JASP-1的儿童和父母对他们在使用JIA的第一年所接受的护理比对照组更满意。结果还表明，完成JASP-1的儿童在12个月后被评估为整体健康状况更好，对照组的儿童（JASP-1=平均4.33，95%置信区间（CI）4.17-4.46），(对照=平均值3.68，95%CI3.29-4.06)，（p=0.002）。此外，JASP-1组的儿童对日常生活的疾病影响较小（JASP-1=平均0.15，95％CI0.07-0.24）（对照=平均0.40，95％CI0.13-0.67），（p=0.017），活动关节少于对照组（JASP-1=平均0.62，95％CI0.35-1.58），（对照=平均0.87，95%CI0.18-1.56），（p=0.054）。
结论：像JASP-1这样的支持计划可能是一种有效的方法，不仅可以在心理上支持新诊断为JIA的儿童及其父母，而且还可以增加儿童的整体身体健康并改善儿科风湿病的护理质量。
背景：在ClinicalTrials.gov中回顾性注册，2月13日，ID为NCT06284616。
