使用健康相关生活质量监测青少年特发性关节炎患者。
Monitoring patients with juvenile idiopathic arthritis using health-related quality of life.
机构信息
Department of Pediatric Immunology and Rheumatology, Wilhelmina Children's Hospital, University Medical Center Utrecht, 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. 2021 Mar 22;19(1):40. doi: 10.1186/s12969-021-00527-z.
BACKGROUND
Pediatric patients with juvenile idiopathic arthritis (JIA) are at risk for a lower health-related quality of life compared to their healthy peers. Remote monitoring of health-related quality of life using electronic patient-reported outcomes could provide important information to treating physicians. The aim of this study was to investigate if self-assessment with the EuroQol five-dimensional 'youth' questionnaire with five levels (EQ-5D-Y-5 L) inside a mobile E-health application could identify JIA patients in need of possible treatment adjustments.
METHODS
The EQ-5D-Y-5 L was completed via a mobile application (Reuma2Go) between October 2017 and January 2019. The clinical juvenile arthritis disease activity score with 71 joint count (cJADAS-71) was reported at every corresponding visit as reference for disease activity. Previously described cJADAS-71 thresholds were used to identify patients in possible need of treatment adjustments. Discriminatory power of the EQ-5D-Y-5 L was assessed by ROC-curves and diagnostic characteristics.
RESULTS
Sixty-eight JIA patients completed the EQ-5D-Y-5 L questionnaire. Median cJADAS-71 indicated low disease activity overall in the studied population. ROC curves and diagnostic characteristics demonstrated that self-assessment with the EQ-5D-Y-5 L could distinguish between patients with inactive disease (or minimal disease activity) and moderate to high disease activity with good accuracy (87%), sensitivity (85%), specificity (89%) and negative predictive value (86%).
CONCLUSIONS
Results demonstrate that the EQ-5D-Y-5 L was able to identify JIA patients in need of possible treatment adjustments in our studied population. Remote monitoring of health-related quality of life and patient-reported outcomes via E-health applications could provide important additional information to determine the frequency of clinical visits, assess therapeutic efficacy and guide treat-to-target strategies in pediatric patients with JIA.
背景
与健康同龄人相比，患有幼年特发性关节炎（JIA）的儿科患者的健康相关生活质量较低。使用电子患者报告结果进行健康相关生活质量的远程监测可为治疗医生提供重要信息。本研究的目的是探讨使用移动电子健康应用程序内的欧洲五维健康量表（EQ-5D-Y-5L）进行自我评估是否可以识别出需要可能调整治疗的 JIA 患者。
方法
EQ-5D-Y-5L 于 2017 年 10 月至 2019 年 1 月期间通过移动应用程序（Reuma2Go）完成。每次就诊时都报告临床幼年关节炎疾病活动评分 71 关节计数（cJADAS-71），作为疾病活动的参考。使用先前描述的 cJADAS-71 阈值来识别可能需要治疗调整的患者。通过 ROC 曲线和诊断特征评估 EQ-5D-Y-5L 的判别能力。
结果
68 名 JIA 患者完成了 EQ-5D-Y-5L 问卷。中位 cJADAS-71 表明研究人群整体疾病活动度低。ROC 曲线和诊断特征表明，使用 EQ-5D-Y-5L 进行自我评估可以很好地区分无疾病活动（或最小疾病活动）和中高度疾病活动的患者，准确性为 87%，灵敏度为 85%，特异性为 89%，阴性预测值为 86%。
结论
结果表明，在我们的研究人群中，EQ-5D-Y-5L 能够识别出需要可能调整治疗的 JIA 患者。通过电子健康应用程序进行健康相关生活质量和患者报告结果的远程监测，可以为确定临床就诊频率、评估治疗效果和指导 JIA 儿科患者的靶向治疗策略提供重要的额外信息。
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