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

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY European Journal of Paediatric Neurology Pub Date : 2024-09-01 DOI:10.1016/j.ejpn.2024.08.007

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引用次数: 0

Abstract

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.

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拉丁美洲 153 名神经肌肉障碍儿童与健康相关的生活质量：是年龄、功能依赖还是诊断？

神经肌肉疾病会影响儿童与健康相关的生活质量，但在拉丁美洲却缺乏对这一概念进行测量的研究。为了满足这一需求，本研究旨在探讨拉丁美洲儿童和青少年的生活质量及其与年龄、功能依赖性和具体诊断之间的关系。本研究对 133 名患有各种神经肌肉疾病的儿童（2-18 岁）的照顾者进行了横断面相关性研究。家长们通过 PedsQL GCS 和 PedsQL NMM 报告其子女与健康相关的生活质量。在比较高度功能依赖和轻度依赖儿童的生活质量时，发现两者之间存在差异（P = 0.05）。在儿童诊断方面没有发现明显差异。最后，生活质量与儿童的年龄高度相关，即使控制了不同年龄之间的功能依赖差异也是如此。患有神经肌肉疾病的儿童和青少年不仅在身体功能方面，而且在社会心理功能方面都表现出与健康相关的生活质量下降。与健康相关的生活质量可能因儿童的年龄和功能依赖性而异。

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来源期刊

European Journal of Paediatric Neurology 医学-临床神经学

CiteScore

6.30

自引率

3.20%

发文量

115

审稿时长

81 days

期刊介绍： The European Journal of Paediatric Neurology is the Official Journal of the European Paediatric Neurology Society, successor to the long-established European Federation of Child Neurology Societies. Under the guidance of a prestigious International editorial board, this multi-disciplinary journal publishes exciting clinical and experimental research in this rapidly expanding field. High quality papers written by leading experts encompass all the major diseases including epilepsy, movement disorders, neuromuscular disorders, neurodegenerative disorders and intellectual disability. Other exciting highlights include articles on brain imaging and neonatal neurology, and the publication of regularly updated tables relating to the main groups of disorders.