M Girabent-Farrés1, C Bagur-Calafat2, M Amor-Barbosa2, D Natera-de Benito3, A Medina-Rincón4,2, J Fagoaga2,3. 1. Universitat Pompeu Fabra, Mataró, Barcelona, España. 2. Universitat Internacional de Catalunya, Sant Cugat del Vallès, España. 3. Hospital Universitari Sant Joan de Déu, Esplugues de Llobregat, España. 4. Parc Sanitari Pere Virgili, Barcelona, España.
Abstract
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.
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.