Rheumatology and Rehabilitation, School of Medicine, Ain Shams University, Cairo, Egypt.
Rheumatology, Darent Valley Hospital, Dartford, Kent, England, DA2 8DA, UK.
Clin Rheumatol. 2019 Aug;38(8):2219-2226. doi: 10.1007/s10067-019-04490-9. Epub 2019 Mar 5.
To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis.
A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27.
The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890-0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician's scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6).
Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children's adherence to therapy, comorbidities, and motivation on an individual basis.
评估一个有插图的儿童/家长多维患者报告结局测量（PROM）问卷的有效性、可靠性、可理解性和对变化的反应性，该问卷可评估幼年特发性关节炎儿童的结构结局测量指标。
在这项多中心研究中，共纳入 122 例幼年特发性关节炎儿童。该问卷包括七个类别：（1）功能能力；（2）健康相关生活质量；（3）疾病活动度测量：疼痛、总体评估、疲劳和晨僵；（4）自我报告的关节触痛；（5）当前用药、副作用和治疗依从性；（6）合并症；和（7）患者动机。所有项目都有插图支持，为儿童提供问题的视觉印象。问卷有家长和患者两个版本。疾病活动状态使用 JADAS-27 进行评估。
问卷具有较高的可靠性，标准化 alpha 值为 0.890-0.978。问卷项目与疾病活动度的临床参数显著相关（p<0.01）。患者报告的触痛关节与医生评分显著相关（0.842）。功能障碍、生活质量和动机评分的变化与治疗反应的疾病活动状态显著不同（p<0.01）。有插图的 PROM 问卷也具有较高的可理解性（9.6）。
将 PROM 纳入标准临床实践是可行且适用的。有插图的问卷具有有效性和可靠性。它为疾病活动评分数据提供了一个信息丰富、定量的测量方法，同时便于评估儿童的治疗依从性、合并症和个体动机。
