Spanish translation and validation of the neuromuscular module of the Pediatric Quality of Life Inventory (PedsQL): evaluation of the quality of life perceived by the parents of 2-4-year-old children with neuromuscular diseases
Introduction. Paediatric neuromuscular disorders, which negatively impact on children’s health-related quality of life (HRQoL), are a frequent cause of parental consultation with a physiotherapist. Parents’ stress overload triggers a poor perception of their children’s HRQoL. For this reason, it is essential to have psychometrically sound instrument to measure parent’s perceptions such as the Pediatric Quality of Life Inventory (PedsQL) Neuromuscular Module.
Aim. To assess the validity and reliability of the Spanish version of PedsQL Neuromuscular Module for parent perceived quality of life of children aged 2-4 with neuromuscular disorders.
Subjects and methods. The cognitive validity of the Spanish version of PedsQL was carried out with Mapi Research Trust permission. Subsequently, a test-retest was performed with 42 parent volunteers of children aged 2-4 with paediatric neuromuscular disorders. This allowed an evaluation of PedsQL intra-observer concordance and internal consistency. Finally, construct validity was evaluated through factor analysis.
Results. The Cronbach alpha and all correlation intra-observer coefficients were higher than 0.8, indicating excellent validity and reliability. The construct validity analysis presented 63.5% variability and such analysis suggested that a seven-dimension construct might be a better fit than three.
Conclusions. The Spanish version of PedsQL Neuromuscular Module for parent perceived quality of life of children aged 2-4 presented excellent validity and reliability.
Key words. Health-related quality of life. Neuromuscular disorders. Pediatric physical therapy. PedsQL. Validity and reliability.