Section of Rheumatology, Department of Paediatrics, University of Calgary and Alberta Children's Hospital, 2888 Shaganappi Trail NW, Calgary, AB T3B 6A8, Canada.
Division of Rheumatology, Department of Paediatrics, University of Toronto and The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada; Department of Medicine and Institute of Health Policy Management and Evaluation, University of Toronto, 155 College St, Toronto, ON M5T 3M7, Canada.
Best Pract Res Clin Rheumatol. 2014 Apr;28(2):331-50. doi: 10.1016/j.berh.2014.04.001.
Measurement of health outcomes in pediatric rheumatic diseases is a critical component of clinical practice and research studies. Measures should include the biological, physical, and psychosocial dimensions of health. Health outcome measures are developed systematically, often using consensus methods. Prior to implementation into practice, health outcome measures must undergo evaluation of measurement properties such as reliability, validity, and responsiveness. There are several health outcome measures available for juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis, many of which are composite measures of disease activity. In addition, tools exist for measuring physical functioning and health-related quality of life. There is increasing focus on the incorporation of patient-reported or parent-reported outcomes when measuring the health state of patients with pediatric rheumatic diseases. Further work is required to determine the optimal health outcome measures and approach for eliciting the patient's perception of their health state in pediatric rheumatology.
在儿科风湿病的临床实践和研究中，对健康结果的测量是一个关键组成部分。测量应包括健康的生物学、身体和社会心理维度。健康结果的测量方法是系统开发的，通常使用共识方法。在将健康结果的测量方法应用于实践之前，必须对其测量特性进行评估，如可靠性、有效性和反应性。有几种健康结果的测量方法可用于幼年特发性关节炎、幼年系统性红斑狼疮和幼年皮肌炎，其中许多是疾病活动的综合测量方法。此外，还有用于测量身体功能和健康相关生活质量的工具。当测量儿科风湿病患者的健康状况时，越来越关注患者或其父母报告的结果。还需要进一步的工作来确定最佳的健康结果的测量方法和方法，以了解患者对其健康状况的感知。
