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
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 so...
| Autores: | , , , , , |
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| Tipo de recurso: | artículo |
| Estado: | Versión publicada |
| Fecha de publicación: | 2019 |
| País: | España |
| Institución: | Fundació Sant Joan de Déu |
| Repositorio: | r-FSJD. Repositorio Institucional de Producción Científica de la Fundació Sant Joan de Déu |
| OAI Identifier: | oai:fsjd.fundanetsuite.com:p16878 |
| Acceso en línea: | https://fsjd.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=16878 |
| Access Level: | acceso abierto |
| Palabra clave: | Health-related quality of life Neuromuscular disorders Pediatric physiotherapy PedsQL Validity and reliability |
| Sumario: | 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 MapiResearch-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. |
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