The Reliability and Validity of the Greek Version of the Pediatric Quality of Life Inventory™ 30 Duchenne Muscular Dystrophy Module in Children With Duchenne Muscular Dystrophy
Author(s)
Eleni Katsomiti, PhD1, Catherine Kastanioti, PhD1, Elissavet Chroni, PhD2, George Mavridoglou, PhD3, George Gourzoulidis, PhD4.
1Department of Business and Organizations Administration, University of the Peloponnese, Kalamata, Greece, 2Neurology Department Medical School, University of Patras, Patra, Greece, 3Department of Accounting and Finance, University of Peloponnese, Kalamata, Greece, 4Health Through Evidence, Athens, Greece.
1Department of Business and Organizations Administration, University of the Peloponnese, Kalamata, Greece, 2Neurology Department Medical School, University of Patras, Patra, Greece, 3Department of Accounting and Finance, University of Peloponnese, Kalamata, Greece, 4Health Through Evidence, Athens, Greece.
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.
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.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR241
Topic
Methodological & Statistical Research, Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Rare & Orphan Diseases