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Spanish translation and validation of the Neuromuscular Module of the Pediatric Quality of Life Inventory (PedsQL): evaluation of the quality of life perceived by 8-18 years old children with neuromuscular diseases and by their parents

M. Girabent-Farrés, J. Fagoaga, M. Amor-Barbosa, C. Bagur-Calafat [REV NEUROL 2018;67:425-435] PMID: 30484275 DOI: https://doi.org/10.33588/rn.6711.2018248

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Volumen 67 | Number 11 | Nº of views of the article 7.713 | Nº of PDF downloads 282 | Article publication date 01/12/2018

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ABSTRACT

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 childrens 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. KeywordsHealth-related quality of life Neuromuscular disorders Pediatric physical therapy PedsQL Validity and reliability CategoriesCalidad, Gestión y Organización Asistencial

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Spanish translation and validation of the Neuromuscular Module of the Pediatric Quality of Life Inventory (PedsQL): evaluation of the quality of life perceived by 8-18 years old children with neuromuscular diseases and by their parents

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