Consolaro Alessandro, Vitale Rosa, Pistorio Angela, Lattanzi Bianca, Ruperto Nicolino, Malattia Clara, Filocamo Giovanni, Viola Stefania, Martini Alberto, Ravelli Angelo
Istituto di Ricovero e Cura a Carattere Scientifico G. Gaslini, Genova, Italy.
J Rheumatol. 2007 Aug;34(8):1773-6. Epub 2007 Jul 1.
To investigate discrepancies between physicians' and parents' ratings of inactive disease in children with juvenile idiopathic arthritis (JIA) and the determinants of the discrepancy.
Study data were obtained from the clinical database generated at the study unit. Each patient visit included a standardized assessment of JIA outcome measures. One visit for each patient was selected for analysis. Three definitions of inactive disease were applied to the data: a physician-based definition (physician global assessment = 0); a parent-based definition (parent global assessment = 0); and a formal definition, based on fulfillment of newly developed criteria for inactive disease in JIA.
Of 1237 visits made by 537 patients that included both physician and parent global assessments, 265 fulfilled the physician-based definition and/or the parent-based definition of inactive disease. Concordance between physicians and parents in rating the disease as inactive was seen in 40% of the visits, whereas in 60% of visits the 2 assessments were discordant. Parents tended to disagree with physicians in rating the disease as inactive if the child had pain or functional impairment, whereas physicians tended to disagree with parents in the presence of active joint symptoms. Only 2/3 of the 79 visits that fulfilled the formal definition of inactive disease also met the parent-based definition of inactive disease.
We found frequent discordance between physicians' and parents' ratings of inactive disease in children with JIA, which suggests that the parent's rating of a child's disease activity should be considered for inclusion in the definition of clinical remission for JIA.
调查医生与家长对幼年特发性关节炎（JIA）患儿非活动性疾病的评估差异以及造成这种差异的决定因素。
研究数据来自研究单位生成的临床数据库。每次患者就诊都包括对JIA结局指标的标准化评估。为分析选取每位患者的一次就诊记录。将非活动性疾病的三种定义应用于数据：基于医生的定义（医生整体评估=0）；基于家长的定义（家长整体评估=0）；以及基于满足JIA非活动性疾病新制定标准的正式定义。
在537名患者的1237次就诊记录中，同时包含医生和家长的整体评估，其中265次符合基于医生或基于家长的非活动性疾病定义。在40%的就诊记录中，医生和家长对疾病为非活动性的评估一致，而在60%的就诊记录中，两种评估不一致。如果孩子有疼痛或功能障碍，家长倾向于不同意医生将疾病评为非活动性，而在存在关节活动症状时，医生倾向于不同意家长的评估。在符合非活动性疾病正式定义的79次就诊记录中，只有2/3也符合基于家长的非活动性疾病定义。
我们发现医生与家长对JIA患儿非活动性疾病的评估经常不一致，这表明在JIA临床缓解的定义中应考虑家长对孩子疾病活动度的评估。
