【摘要】 目的 ：分析8～12岁风湿病患儿生活质量自我报告与父母报告的一致性现状，为制定针对性干预对策提供依据。方法 ：采用便利抽样法，于2024年1月—6月选取在安徽省某三级甲等儿童医院住院治疗的202对风湿病患儿及其父母为研究对象，采用一般资料调查表、中文版儿童生活质量测定量表风湿模块进行调查。通过组内相关系数（Intraclass Correlation Coefficient,ICC）对风湿病患儿自我报告与父母报告的风湿模块生活质量进行一致性水平检验。结果 ：患儿生活质量风湿模块自我报告、父母报告得分分别为（66.00±8.82）、（67.96±7.17）分，总体一致性一般(ICC=0.493,P<0.001)，在疼痛维度一致性中等（ICC=0.701,P<0.001），在治疗维度一致性一般（ICC=0.542,P<0.001），在日常生活（ICC=0.376,P<0.001）、担忧（ICC=0.169,P=0.008）和交流（ICC=0.253,P<0.001）维度上一致性较低。结论 ：8～12岁风湿病患儿疾病特异性生活质量较低，自我报告与父母报告一致性中等偏低，且其内隐体验易被父母忽视。提示医护人员应重视该年龄段患儿主诉，制定以家庭为中心的二元干预策略，提升患儿生活质量。更多还原

【Abstract】 Objective: To analyze the consistency between self-reported quality of life and parent-reported quality of life in children with rheumatic diseases aged 8-12 years, aiming to provide evidence for formulating targeted intervention strategies. Methods: From January to June 2024, a convenience sample of 202 children with rheumatic diseases and their parents from a tertiary grade A pediatric hospital in Anhui province were surveyed by using a general information questionnaire and Pediatric Quality of Life InventoryTM 3.0-Rheumatology Module(Peds QLTM 3.0-RM). The Intraclass Correlation Coefficient(ICC) was used to analyze the consistency between self-reported and parent-reported on the Peds QLTM 3.0-RM. Results: The scores of the Peds QLTM 3.0-RM reported by the children and parents were 66.00±8.82 and 67.96±7.17, respectively. The overall consistency was moderate(ICC=0.493, P<0.001). Consistency in the pain dimension was fair(ICC=0.701, P<0.001), while in the treatment dimension, it was moderate(ICC=0.542, P<0.001). In the dimensions of daily activities(ICC=0.376, P<0.001), worry(ICC=0.169, P=0.008), and communication(ICC=0.253, P<0.001), the consistency was low. Conclusion: The quality of life in children with rheumatic diseases aged 8 to 12 years was low. The consistency between self-reports and parent-reports was moderately low, and the children’s internal experiences were easily overlooked by parents. It is suggested that clinical attention should be given to the reports of children in this age group, and medical staff should develop family-centered dyadic intervention strategies to improve the children’s quality of life.更多还原