Reliability and validity of the Thai version of the Pediatric Quality of Life inventory™ 3.0 Duchenne Muscular Dystrophy module in Thai children with Duchenne Muscular Dystrophy

Abstract

© 2019 The Author(s). Background: Duchenne Muscular Dystrophy (DMD) is the most common genetic neuromuscular disorder in children. This chronic illness may impact the physical, family, social and school life of affected children and their families. These impacts can be assessed using a disease-specific measure of health-related quality of life (HRQOL). The Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 DMD Module is designed to assess quality of life in children with DMD. This study aimed to evaluate the reliability and validity of the Thai version of the PedsQL™ 3.0 DMD Module in Thai children aged 5-18 years. Method and materials: The Thai translation of the PedsQL™ 3.0 Duchenne Muscular Dystrophy Module was performed in accordance with established guidelines using forward-back translation and was approved by the creator of the instrument. The Thai version of the scale was administered to children with DMD and their parents at the neuromuscular clinic at Siriraj Hospital and during the annual DMD Day meeting. Psychometric properties were established, and a re-test was performed within 2-4 weeks. Results: Fifty-six children were enrolled. An acceptable level of internal reliability was achieved, as measured by α > 0.7 (total score: child report α = 0.88, parent report α = 0.92). Test-retest reliability showed good agreement, with the following intraclass correlation coefficients (ICCs) for the total score (calculated using all subscales from the child reports and parent reports): child report ICCs = 0.74 and parent report ICCs = 0.88. The mean total scale score was 66.03 for ambulatory children and 55.87 (P = 0.08) for non-ambulatory children according to child self-reports and 70.01 (ambulatory) and 54.29 (non-ambulatory) (P ≤ 0.01) according to parent proxy reports. The child self-reports were in acceptable agreement with the parent proxy reports for most subscales (ICC range 0.49-0.81). Conclusions: The PedsQL™ 3.0 DMD Module Thai version is a reliable and valid measure of disease-specific health-related quality of life in Thai children with Duchenne muscular dystrophy.