The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module

OBJECTIVE: The Pediatric Quality of Life Inventory (PedsQL) is a modular instrument designed to measure health-related quality of life (HRQOL) in children and adolescents ages 2-18 years. The 23-item PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL disease-specific modules. The 22-item PedsQL 3.0 Rheumatology Module was designed to measure pediatric rheumatology-specific HRQOL. This study was undertaken to demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology. METHODS: The 4 PedsQL 4.0 Generic Core Scales (physical, emotional, social, and school functioning) and the 5 PedsQL 3.0 Rheumatology Module scales (pain and hurt, daily activities, treatment, worry, and communication) were administered to 231 children and 244 parents (271 subjects accrued overall) recruited from a pediatric rheumatology clinic. RESULTS: Internal consistency reliability for the PedsQL Generic Core total scale score (alpha = 0.91 for child self report, alpha = 0.93 for parent proxy report), physical health summary score (alpha = 0.87 for child self report, alpha = 0.89 for parent proxy report), and psychosocial health summary score (alpha = 0.86 for child self report, alpha = 0.90 for parent proxy report) were acceptable for group comparisons. The Rheumatology Module scales also demonstrated acceptable reliability for group comparisons (alpha = 0.75-0.86 for child self report, alpha = 0.82-0.91 for parent proxy report). Validity was demonstrated using the known-groups method. The PedsQL distinguished between healthy children and children with rheumatic diseases as a group. The responsiveness of the PedsQL was demonstrated through patient change over time as a result of clinical intervention. CONCLUSION: The results demonstrate the reliability, validity, and responsiveness of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module in pediatric rheumatology.