Duffy Ciarán M, Wells George A, Russell Anthony S, Haraoui Boulos
Department of Pediatrics, Children's Hospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, Ontario, Canada.
J Rheumatol Suppl. 2011 Nov;88:20-5. doi: 10.3899/jrheum.110905.
It has been well established that children with a chronic disease, including those with inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA), report lower health-related quality of life (HRQOL) as compared to their healthy peers. Over the past 20 years there has been a significant emphasis on the development of measures of function and HRQOL for application in JIA and pediatric IBD. Several of the instruments currently used to assess HRQOL in children with immune-mediated inflammatory diseases (IMID), including the Juvenile Arthritis Quality of Life Questionnaire (JAQQ) and IMPACT questionnaire for pediatric IBD, were developed and validated by Canadian-based research teams. This review describes several disease-specific and generic instruments used to assess QOL in children with IBD or JIA. It also provides an overview of findings from several outcomes studies that applied the described tools in assessing HRQOL in children and adolescents with these conditions.
已有充分证据表明,患有慢性疾病的儿童,包括患有炎症性肠病(IBD)和幼年特发性关节炎(JIA)的儿童,与健康同龄人相比,其健康相关生活质量(HRQOL)较低。在过去20年里,人们一直非常重视开发用于JIA和儿童IBD的功能和HRQOL测量方法。目前用于评估免疫介导的炎症性疾病(IMID)儿童HRQOL的几种工具,包括青少年关节炎生活质量问卷(JAQQ)和儿童IBD的IMPACT问卷,都是由加拿大的研究团队开发和验证的。本综述描述了几种用于评估IBD或JIA儿童生活质量的疾病特异性和通用工具。它还概述了几项结果研究的结果,这些研究应用所描述的工具来评估患有这些疾病的儿童和青少年的HRQOL。