Pediatric Quality of Life Inventory (PedsQL) 3.0 Duchenne Muscular Dystrophy module-Greek Translation: A Quality of Life tool in Duchenne Muscular Dystrophy

Abstract

Purpose: Duchenne Muscular Dystrophy (DMD) is a genetic disorder in boys’ early childhood that adversely affects the cardiac, respiratory, and skeletal muscle’s function and emotional and social functioning as aspects of health-related quality of life (HRQoL). The current study aimed to translate the disease-specific Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 DMD Module into Greek to make it feasible to administer in patients with DMD for national and cross-national studies. Methods: Established guidelines, using forward-back translation were followed for the performance of the Greek translation of the PedsQL™ 3.0 DMD Module and approval was given by the creator of the instrument. The administration of the Greek version of the module took place at the patients’ organization MDA-Hellas, a non-profit association for neuromuscular disorders, to 28 participants, children with DMD (aged 8-18 years), and their caregivers. The inventory consists of a child self-report format for children aged 8 to 18 years and a caregiver proxy-report format for children ages 5 to 18 years. Results: The module encompasses four scales: 1) Daily activities (5 items), 2) Treatment (4 items), 3) Worry (6 items) and Communication (3 items). All the questions of the PedsQL™ 3.0 DMD module were translated without any major discrepancy. The results confirmed the feasibility of administering the Greek version of the PedsQL 3.0 DMD Module. It has a clear focus and is concise. The results showed that the quality of life of DMD patients from age 5 to 18 years is affected as reported by parents. Conclusion: The results showed that the translation of the Greek version of the PedsQL 3.0 Duchenne Muscular Dystrophy Module questionnaire was well perceived and accepted. It has a clear focus is comprehensive and can be used for health-related quality-of-life studies in Greek-speaking patients with Duchenne Muscular Dystrophy-DMD aged 5-18 years old.