Traducción y validación al español del módulo neuromuscular de la escala Pediatric Quality of Life Inventory (PedsQL): evaluación de la calidad de vida autopercibida por niños de 8-18 años con enfermedades neuromusculares y sus padres

Introduction. The quality of life related to health of children with pediatric neuromuscular diseases is studied from the perspective of self-perception and parent-perception. It is therefore essential to dispose valid scales such as Pediatric Quality of Life inventory (PedsQL) Neuromuscular Module for its correct assessment. Aim. To assess the validity and reliability of the Spanish version of PedsQL Neuromuscular Module for self-perceived and parent-perceived quality of life of children aged 8-18 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 90 children volunteers with neuromuscular diseases, 50 aged 8-12 and 40 aged 13-18, and 85 of those children's parents. 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 and a higher internal consistency. The construct validity analysis suggested that a new construct with more might be a better fit than three and it will be able to explain a higher percentage of variability. Conclusions. The Spanish version of PedsQL Neuromuscular Module for self-perceived and parent-perceived quality of life of children aged 8-18 presented excellent validity and reliability.