Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?

Neuromuscular diseases impact on children’s health related quality of life but there is a lack of studies in Latin America that measured this construct. To respond to this need, this study aimed to explore quality of life and its relationship with age, functional dependence and specific diagnosis...

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Autores principales: Ortega, Javiera, Vázquez, Natalia, Amayra Caro, Imanol, Muntadas, Javier, Squitín Tasende, Magalí, Rodriguez Bermejo, Alicia
Formato: Artículo
Lenguaje:Inglés
Publicado: Elsevier 2024
Materias:
NIÑOS
ADOLESCENTES
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
FUNCIONAMIENTO PSICOSOCIAL
DEPENDENCIA FUNCIONAL
Acceso en línea:https://repositorio.uca.edu.ar/handle/123456789/19045
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Repositorio Institucional de la Universidad Católica Argentina (UCA) de Universidad Católica Argentina
id I33-R139-123456789-19045
record_format dspace
spelling I33-R139-123456789-190452024-11-16T05:01:17Z Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis? Ortega, Javiera Vázquez, Natalia Amayra Caro, Imanol Muntadas, Javier Squitín Tasende, Magalí Rodriguez Bermejo, Alicia NIÑOS ADOLESCENTES ENFERMEDADES NEUROMUSCULARES TRASTORNOS NEUROMUSCULARES CALIDAD DE VIDA FUNCIONAMIENTO PSICOSOCIAL DEPENDENCIA FUNCIONAL Neuromuscular diseases impact on children’s health related quality of life but there is a lack of studies in Latin America that measured this construct. To respond to this need, this study aimed to explore quality of life and its relationship with age, functional dependence and specific diagnosis in children and adolescents in Latin America. A cross-sectional correlation study was carried out with 133 caregivers on children (2–18 years old) with various neuromuscular disorders. Parents reported on their children’s health related quality of life through the PedsQL GCS and the PedsQL NMM. Differences in quality of life were found when comparing children with high functional dependence with those with mild dependence (p = 0.05). No significant differences were found regarding the child diagnosis. Finally, quality of life was highly correlated with the child’s age, even when controlling for functional dependence differences between ages. Children and adolescents with neuromuscular show a diminished health related quality of life, not only in physical functioning but in their psychosocial functioning. Health related quality of life may vary according to the child’s age and functional dependence. 2024-11-15T12:07:58Z 2024-11-15T12:07:58Z 2024 Artículo 1090-3798 (impreso) 1532-2130 (online) https://repositorio.uca.edu.ar/handle/123456789/19045 10.1016/j.ejpn.2024.08.007 eng Atribución-NoComercial-CompartirIgual 4.0 Internacional http://creativecommons.org/licenses/by-nc-sa/4.0/ application/pdf América Latina Elsevier European Journal of Paediatric Neurology. 2024 (5)
institution Universidad Católica Argentina
institution_str I-33
repository_str R-139
collection Repositorio Institucional de la Universidad Católica Argentina (UCA)
language Inglés
topic NIÑOS
ADOLESCENTES
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
FUNCIONAMIENTO PSICOSOCIAL
DEPENDENCIA FUNCIONAL
spellingShingle NIÑOS
ADOLESCENTES
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
FUNCIONAMIENTO PSICOSOCIAL
DEPENDENCIA FUNCIONAL
Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
Muntadas, Javier
Squitín Tasende, Magalí
Rodriguez Bermejo, Alicia
Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
topic_facet NIÑOS
ADOLESCENTES
ENFERMEDADES NEUROMUSCULARES
TRASTORNOS NEUROMUSCULARES
CALIDAD DE VIDA
FUNCIONAMIENTO PSICOSOCIAL
DEPENDENCIA FUNCIONAL
description Neuromuscular diseases impact on children’s health related quality of life but there is a lack of studies in Latin America that measured this construct. To respond to this need, this study aimed to explore quality of life and its relationship with age, functional dependence and specific diagnosis in children and adolescents in Latin America. A cross-sectional correlation study was carried out with 133 caregivers on children (2–18 years old) with various neuromuscular disorders. Parents reported on their children’s health related quality of life through the PedsQL GCS and the PedsQL NMM. Differences in quality of life were found when comparing children with high functional dependence with those with mild dependence (p = 0.05). No significant differences were found regarding the child diagnosis. Finally, quality of life was highly correlated with the child’s age, even when controlling for functional dependence differences between ages. Children and adolescents with neuromuscular show a diminished health related quality of life, not only in physical functioning but in their psychosocial functioning. Health related quality of life may vary according to the child’s age and functional dependence.
format Artículo
author Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
Muntadas, Javier
Squitín Tasende, Magalí
Rodriguez Bermejo, Alicia
author_facet Ortega, Javiera
Vázquez, Natalia
Amayra Caro, Imanol
Muntadas, Javier
Squitín Tasende, Magalí
Rodriguez Bermejo, Alicia
author_sort Ortega, Javiera
title Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
title_short Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
title_full Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
title_fullStr Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
title_full_unstemmed Health-related quality of life in 153 children with neuromuscular disorders in Latin America: is it age, functional dependence or diagnosis?
title_sort health-related quality of life in 153 children with neuromuscular disorders in latin america: is it age, functional dependence or diagnosis?
publisher Elsevier
publishDate 2024
url https://repositorio.uca.edu.ar/handle/123456789/19045
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