Quality of Life and Duchenne Muscular Dystrophy: Greek Translation of the Pediatric Quality of Life Inventory (PEDSQL)3.0 Duchenne Muscular Dystrophy Module
Author(s)
Katsomiti E1, Kastanioti C1, Chroni E2, Mavridoglou G1, Douka A3, Karras A3, Gourzoulidis G4
1University of Peloponnese, Kalamata, Greece, 2University of Patras, Patra, Greece, 3MDA-Hellas, non-profit organization, Athens, Greece, 4Health Through Evidence, Athens, A1, Greece
Presentation Documents
OBJECTIVES: Duchenne Muscular Dystrophy (DMD) is a genetic disorder in early childhood adversely affects the cardiac, respiratory and skeletal muscle’s function as well as aspects of health-related quality of life (HRQoL) such as emotional and social functioning. The current study aimed to translate the disease specific Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 DMD Module into Greek in order to assess HRQoL of patients with DMD for national and cross-national studies.
METHODS: The Greek translation of the PedsQL™ 3.0 DMD Module was performed in accordance with established guidelines using forward- back translation and was approved by the creator of the instrument. The Greek version of the module was administered to 28 participants children with DMD (aged 8-18 years) and their care givers at the patients’ organization MDA-Hellas, a non-profit association for neuromuscular disorders. The inventory is comprised of parallel child self-report and care giver proxy-report formats for children aged 8 to 18 years, and a care giver proxy-report format for children ages 5 to 7 years.
RESULTS: The module encompasses four scales: 1) Daily activities (5 items), 2) Treatment (4 items) 3) Worry (6 items) and 4) 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 PedsQL 3.0 DMD Module. It has a clear focus and is concise. The results showed that patients from age 5 to 18 years DMD affects the quality of life of child as reported by parents.
CONCLUSIONS: The results of the translation procedure confirmed the feasibility of administering the Greek version of the PedsQL 3.0 Duchenne Muscular Dystrophy Module questionnaire. It has a clear focus and is concise 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.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
PCR197
Topic
Patient-Centered Research
Topic Subcategory
Instrument Development, Validation, & Translation
Disease
Rare & Orphan Diseases