关键词: 风湿病；儿童；自我报告；父母报告；生活质量；一致性

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 (PedsQLTM 3.0-RM). The Intraclass Correlation Coefficient (ICC) was used to analyze the consistency between self-reported and parent-reported on the PedsQLTM 3.0-RM. Results: The scores of the PedsQLTM 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.

Key words: rheumatic diseases; children; self-report; parental report; quality of life; consistency