Abstract:OBJECTIVES: This study aimed to assess the reliability and validity of the Greek version of the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Duchenne Muscular Dystrophy (DMD) Module, focusing on its suitability for measuring health-related quality of life (HRQoL) in pediatric patients with DMD in clinical practice.
METHODS: A cross-sectional design was employed, with data collected from children diagnosed with DMD and their parents/caregivers during routine annual clinical visits. Reliability was determined through internal consistency (Cronbach’s alpha, α) and test-retest reproducibility (intraclass correlation coefficients, ICC) assessed at a 6-8 month interval. Known-group validity was evaluated by comparing HRQoL scores between ambulatory and non-ambulatory patient groups.
RESULTS: Seventy-nine pediatric patients with DMD and their caregivers participated in the study. Internal consistency reliability was high, with Cronbach’s α exceeding the acceptable threshold of 0.70 (child report α = 0.80; parent/caregiver proxy α = 0.89). Test-retest reproducibility was also robust, indicated by ICC values of 0.92 (child self-report) and 0.81 (parent/caregiver proxy-report) for total scores. Known-group validity analyses demonstrated significant differences between ambulatory and non-ambulatory patients in the child self-report (mean ± SD: 76.29 ± 13.27 vs. 56.91 ± 13.27; p < 0.001) and parent/caregiver proxy-report (70.64 ± 20.75 vs. 52.15 ± 22.54; p < 0.001). Agreement between child self-reports and parent/caregiver proxy-reports was satisfactory across subscales, with ICC values ranging from 0.49 to 0.81 (child-report) and from 0.57 to 0.91 (proxy-report).
CONCLUSIONS: The Greek version of the PedsQL™ 3.0 DMD Module demonstrated excellent reliability and validity for assessing disease-specific HRQoL in children with DMD. This instrument is suitable for use in clinical settings and research, facilitating enhanced patient-centered care and informed decision-making in managing DMD.
