Spanish translation and validation of the Neuromuscular Module of the Pediatric Quality of Life Inventory (PedsQL): evaluation of the quality of life perceived by 5-7 years old children with neuromuscular disorders and by their parents
Correspondencia: Dr. Joaquim Fagoaga Mata. Departamento de Fisioterapia. Universitat Internacional de Catalunya. Josep Trueta, s/n. E-08195 Sant Cugat del Vallès (Barcelona).
E-mail: jfagoaga@sefi p.org
Introduction: The recent advances in the therapies for some neuromuscular disorders imply a better prognosis. As a consequence, health-related quality of life has emerged as a core outcome. It is particularly important to know both the self-perceived health-related quality of life by children, as soon as possible, as well as the parental perception. Therefore, it is essential to have valid and specific scales for proper assessment. Aim: To assess the validity and reliability of the Spanish version of Pediatric Quality of Life Inventory (PedsQL) Neuromuscular Module for self-perceived and parent perceived quality of life of children aged 5-7 with neuromuscular disorders. Subjects and methods: Cross-cultural validity of the Spanish version was carried out with the permission of the Mapi-Research-Trust. Subsequently, a test-retest was administered to 27 children aged 5-7 and 37 parents in order to evaluate internal consistency, intra-observer reliability and construct validity. Results: The Cronbach alpha coefficient showed good internal consistency for children and was rated as excellent by parents. Furthermore, the intra-observer correlation indicated an excellent reliability for both. Construct validity analysis suggested that a new scale structure with more dimensions might be more adequate. Moreover, said structure will also explain a greater percentage of variability. Conclusion: The Spanish version of PedsQL Neuromuscular Module for the self-perceived and parent-perceived quality of life of children aged 5-7 showed good internal consistency and reliability.
Objetivo Evaluar la validez y la fiabilidad de la versión española del módulo neuromuscular de la Pediatric Quality of Life Inventory (PedsQL) para la medición de la calidad de vida autopercibida por niños de 5 a 7 años con enfermedades neuromusculares y la de sus padres.
Sujetos y métodos Con autorización de Mapi-Research-Trust, se procedió a la adaptación transcultural de la versión española de la escala. Posteriormente, se realizó un test-retest a 27 niños de 5 a 7 años y a 37 padres para evaluar la consistencia interna, la fiabilidad y la validez de constructo.
Resultados El coeficiente alfa de Cronbach mostró una consistencia interna buena para los niños y excelente para los padres. La correlación intraobservador indicó una excelente fiabilidad para ambos. La validez de constructo sugirió que una estructura de más dimensiones podría ser más adecuada y explicaría un mayor porcentaje de variabilidad.
Conclusiones La versión española del módulo neuromuscular de la PedsQL para evaluar calidad de vida de niños de 5 a 7 años con enfermedades neuromusculares y de sus padres tiene buena consistencia interna y fiabilidad.
