Consolaro Alessandro, Giancane Gabriella, Schiappapietra Benedetta, Davì Sergio, Calandra Serena, Lanni Stefano, Ravelli Angelo
Istituto Giannina Gaslini, Genova, Italy.
Università degli Studi di Genova, Genova, Italy.
Pediatr Rheumatol Online J. 2016 Apr 18;14(1):23. doi: 10.1186/s12969-016-0085-5.
Juvenile idiopathic arthritis (JIA), as a chronic condition, is associated with significant disease- and treatment-related morbidity, thus impacting children's quality of life. In order to optimize JIA management, the paediatric rheumatologist has begun to regularly use measurements of disease activity developed, validated and endorsed by international paediatric rheumatology professional societies in an effort to monitor the disease course over time and assess the efficacy of therapeutic interventions in JIA patients.A literature review was performed to describe the main outcome measures currently used in JIA patients to determine disease activity status.The Juvenile Disease Activity Score (JADAS), in its different versions (classic JADAS, JADAS-CRP and cJADAS) and the validated definitions of disease activity and response to treatment represent an important tool for the assessment of clinically relevant changes in disease activity, leading more and more to a treat-to-target strategy, based on a tight and thorough control of the patient condition. Moreover, in recent years, increasing attention on the incorporation of patient-reported or parent-reported outcomes (PRCOs), when measuring the health state of patients with paediatric rheumatic diseases has emerged.We think that the care of JIA patients cannot be possible without taking into account clinical outcome measures and, in this regard, further work is required.
幼年特发性关节炎(JIA)作为一种慢性病,与显著的疾病及治疗相关发病率相关,从而影响儿童的生活质量。为了优化JIA的管理,儿科风湿病学家已开始定期使用由国际儿科风湿病专业协会制定、验证和认可的疾病活动度测量方法,以便长期监测疾病进程并评估JIA患者治疗干预措施的疗效。进行了一项文献综述,以描述目前在JIA患者中用于确定疾病活动状态的主要结局指标。幼年疾病活动评分(JADAS),其不同版本(经典JADAS、JADAS-CRP和cJADAS)以及经过验证的疾病活动度和治疗反应定义,是评估疾病活动度临床相关变化的重要工具,越来越多地导致基于对患者病情严格和全面控制的达标治疗策略。此外,近年来,在测量儿科风湿性疾病患者的健康状况时,对纳入患者报告或家长报告结局(PRCOs)的关注日益增加。我们认为,不考虑临床结局指标就无法对JIA患者进行护理,在这方面,还需要进一步开展工作。