脊髓性肌萎缩症患儿的生活质量：一项病例对照研究。
The quality of life in children with spinal muscular atrophy: a case-control study.
机构信息
Pediatrics Center of Excellence, Department of Pediatric Neurology, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
Department of Physical Medicine and Rehabilitation, Pediatrics Center of Excellence, Children's Medical Center, Tehran University of Medical Sciences, Tehran, Iran.
出版信息
BMC Pediatr. 2022 Dec 12;22(1):708. doi: 10.1186/s12887-022-03751-y.
OBJECTIVES
This study aimed to analyze the health-related quality of life (HRQoL) of patients with spinal muscular atrophy (SMA) based on the type of SMA, demographic and clinical features and compare HRQoL of these patients with a matched healthy control group. METHODS: This was a case-control study of Patients with SMA in Iran. Sixty-six patients with SMA type II and III aged 8-18 years and also 264 healthy age, sex, and socio-economic matched individuals were enrolled. To assess the quality of life, we used the Persian version of the KIDSCREEN-27.
RESULTS
The health-related quality of life between children with type II and type III SMA was not significant in all 5 subscales. However, HRQoL in healthy children was significantly higher than in SMA children in all 5 subscales.
CONCLUSION
The quality of life in children with SMA was lower than the healthy control group in all subscales, and physical well-being and psychosocial aspects are the main domains of life impaired by SMA disease. However, no significant difference between the quality of life in children with SMA type II and type III was observed.
目的
本研究旨在根据脊髓性肌萎缩症（SMA）的类型、人口统计学和临床特征分析 SMA 患者的健康相关生活质量（HRQoL），并将这些患者的 HRQoL 与匹配的健康对照组进行比较。
方法
这是伊朗 SMA 患者的病例对照研究。纳入了 66 名年龄在 8-18 岁的 SMA Ⅱ型和Ⅲ型患者和 264 名年龄、性别和社会经济状况匹配的健康个体。为了评估生活质量，我们使用了 KIDSCREEN-27 的波斯语版本。
结果
在所有 5 个亚量表中，Ⅱ型和Ⅲ型 SMA 患儿之间的 HRQoL 无显著差异。然而，在所有 5 个亚量表中，健康儿童的 HRQoL 显著高于 SMA 儿童。
结论
SMA 患儿的生活质量在所有亚量表中均低于健康对照组，身体幸福感和心理社会方面是 SMA 疾病损害的主要生活领域。然而，SMA Ⅱ型和Ⅲ型患儿的生活质量无显著差异。
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