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本文引用的文献

1
Outcome Monitoring and Clinical Decision Support in Polyarticular Juvenile Idiopathic Arthritis.多关节型幼年特发性关节炎的结局监测和临床决策支持。
J Rheumatol. 2020 Feb;47(2):273-281. doi: 10.3899/jrheum.190268. Epub 2019 Jul 15.
2
Validating 10-joint juvenile arthritis disease activity score cut-offs for disease activity levels in non-systemic juvenile idiopathic arthritis.验证用于非全身型幼年特发性关节炎的疾病活动水平的 10 关节幼年特发性关节炎疾病活动评分切点。
RMD Open. 2019 Apr 24;5(1):e000888. doi: 10.1136/rmdopen-2018-000888. eCollection 2019.
3
2019 American College of Rheumatology/Arthritis Foundation Guideline for the Treatment of Juvenile Idiopathic Arthritis: Therapeutic Approaches for Non-Systemic Polyarthritis, Sacroiliitis, and Enthesitis.2019 年美国风湿病学会/关节炎基金会青少年特发性关节炎治疗指南:非系统性多关节炎、骶髂关节炎和附着点炎的治疗方法。
Arthritis Rheumatol. 2019 Jun;71(6):846-863. doi: 10.1002/art.40884. Epub 2019 Apr 25.
4
Establishing an Updated Core Domain Set for Studies in Juvenile Idiopathic Arthritis: A Report from the OMERACT 2018 JIA Workshop.建立一个更新的幼年特发性关节炎研究核心领域集:来自 OMERACT 2018 JIA 研讨会的报告。
J Rheumatol. 2019 Aug;46(8):1006-1013. doi: 10.3899/jrheum.181088. Epub 2019 Feb 15.
5
Predicting Which Children with Juvenile Idiopathic Arthritis Will Not Attain Early Remission with Conventional Treatment: Results from the ReACCh-Out Cohort.预测哪些幼年特发性关节炎儿童无法通过常规治疗达到早期缓解:ReACCh-Out 队列研究结果。
J Rheumatol. 2019 Jun;46(6):628-635. doi: 10.3899/jrheum.180456. Epub 2019 Jan 15.
6
If patients are the true north, patient-centeredness should guide research.如果患者是真正的北极星,那么以患者为中心就应该指导研究。
Nat Rev Rheumatol. 2019 Jan;15(1):5-6. doi: 10.1038/s41584-018-0129-y.
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Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol.荷兰青少年特发性关节炎患者、护理人员和临床医生按照詹姆斯·林德联盟方法共同制定研究议程:一项研究方案。
Pediatr Rheumatol Online J. 2018 Sep 15;16(1):57. doi: 10.1186/s12969-018-0276-3.
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Non-pharmacological options for managing chronic musculoskeletal pain in children with pediatric rheumatic disease: a systematic review.儿童风湿性疾病患儿慢性肌肉骨骼疼痛的非药物治疗选择:系统评价。
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Long-Term Outcomes Following Achievement of Clinically Inactive Disease in Juvenile Idiopathic Arthritis: The Importance of Definition.幼年特发性关节炎达到临床无活动疾病后的长期结局:定义的重要性。
Arthritis Rheumatol. 2018 Sep;70(9):1519-1529. doi: 10.1002/art.40519. Epub 2018 Jul 22.
10
Treating juvenile idiopathic arthritis to target: recommendations of an international task force.靶向治疗幼年特发性关节炎:国际工作组的建议。
Ann Rheum Dis. 2018 Jun;77(6):819-828. doi: 10.1136/annrheumdis-2018-213030. Epub 2018 Apr 11.

治疗幼年特发性关节炎的目标:达到所有目标的最佳目标定义是什么?

Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals?

机构信息

Department of Pediatric Rheumatology and Immunology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Room KC.03.063.0, P.O. box 85090, 3508, AB, Utrecht, The Netherlands.

Faculty of Medicine, Utrecht University, Utrecht, The Netherlands.

出版信息

Pediatr Rheumatol Online J. 2020 Apr 16;18(1):34. doi: 10.1186/s12969-020-00428-7.

DOI:10.1186/s12969-020-00428-7
PMID:32299430
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7164231/
Abstract

In 2018, an international Task Force formulated recommendations for treating Juvenile Idiopathic Arthritis (JIA) to target. The Task Force has not yet resolved three issues. The first issue is the lack of a single "best" target. The Task Force decided not to recommend the use of a specific instrument to assess inactive disease or remission. Recent studies underscore the use of a broad target definition. The second issue is the basic assumption that a treatment aggressively aimed at the target will have 'domino effects' on other treatment goals as well. Thus far, this assumption was not confirmed for pain, fatigue and stiffness. The third issue is shared decision-making, and the role of individual patient targets. Nowadays, patients and parents should have a more active role in choosing targets and their personal treatment goals. In our department the electronic medical records have been restructured in such a way that the patient's personal treatment goals with a target date appears on the front page. The visualization of their specific personal goals helps us to have meaningful discussions on the individualized treatment strategy and to share decisions. In conclusion, a joint treat to target (T2T) strategy is a promising approach for JIA. The Task Force formulated valuable overarching principles and a first version of recommendations. However, implementation of T2T needs to capture more than just inactive disease. Patients and parents should have an active role in choosing personal targets as well.

摘要

2018 年,一个国际工作组制定了治疗幼年特发性关节炎 (JIA) 的目标建议。该工作组尚未解决三个问题。第一个问题是缺乏单一的“最佳”目标。工作组决定不推荐使用特定的仪器来评估疾病不活动或缓解。最近的研究强调了广泛目标定义的使用。第二个问题是一个基本假设,即积极针对目标的治疗也会对其他治疗目标产生“多米诺骨牌效应”。到目前为止,这一假设尚未在疼痛、疲劳和僵硬方面得到证实。第三个问题是共同决策和个体患者目标的作用。如今,患者和家长应该在选择目标及其个人治疗目标方面发挥更积极的作用。在我们部门,电子病历已经进行了重组,患者带有目标日期的个人治疗目标出现在首页。对他们具体个人目标的可视化有助于我们就个体化治疗策略进行有意义的讨论并做出共同决策。总之,联合靶向治疗 (T2T) 策略是 JIA 的一种很有前途的方法。工作组制定了有价值的总体原则和第一版建议。然而,T2T 的实施需要不仅仅是针对疾病不活动。患者和家长也应该在选择个人目标方面发挥积极作用。