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

• Autores: Ortega, Javiera; Vázquez, Natalia; Amayra Caro, Imanol; Muntadas, Javier; Squitín Tasende, Magalí; Rodriguez Bermejo, Alicia
• Año de publicación: 2024
• Idioma: inglés
• Tipo de recurso: artículo
• Fuente: European Journal of Paediatric Neurology. 2024 (5)
• Materia: NIÑOS; ADOLESCENTES; ENFERMEDADES NEUROMUSCULARES; TRASTORNOS NEUROMUSCULARES; CALIDAD DE VIDA; FUNCIONAMIENTO PSICOSOCIAL; DEPENDENCIA FUNCIONAL
• Institución: Pontificia Universidad Católica Argentina

Fil: Ortega, Javiera. Pontificia Universidad Católica Argentina. Facultad de Psicología y Psicopedagogía. Centro Investigaciones de Psicología y Psicopedagogía; Argentina
Fil: Ortega, Javiera. Consejo Nacional de Investigaciones Científicas y Técnicas de Argentina; Argentina
Fil: Vázquez, Natalia. Fundaci´on de Psicología Aplicada a Enfermedades Huérfanas; Argentina
Fil: Amayra Caro, Imanol. Universidad de Deusto. Facultad de Ciencias de la Salud. Departamento de Psicología. Neuroemotion Equipo de Investigación; España
Fil: Muntadas, Javier. Hospital Italiano de Buenos Aires. Servicio de Neurología Infantil; Argentina
Fil: Squitín Tasende, Magalí. Hospital Italiano de Buenos Aires. Departamento de Pediatría; Argentina
Fil: Rodriguez Bermejo, Alicia. Universidad de Deusto. Facultad de Ciencias de la Salud. Departamento de Psicología. Neuroemotion Equipo de Investigación; España
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.