对青少年局部性硬化皮质与健康相关的生活质量影响的系统审查
Luis F Sanchez-Espino1, Nadia Luca2, Elena Pope1
1The Hospital for Sick Children and University of Toronto, Toronto, Ontario, Canada.
Arthritis care & research
|September 26, 2023
概括
青少年局部性硬化症 (JLS) 显著影响儿童.
科学领域:
- 皮肤病学 皮肤病学
- 心理学 心理学 心理学
- 儿科 儿科 儿科
背景情况:
- 青少年局部性硬化症 (JLS),也称为形态性硬化症,是一种炎症性和硬化性疾病,影响皮肤,筋膜,肌肉和骨.
- 与儿童JLS相关的心理社会并发症尚未得到充分了解.
研究的目的:
- 系统地审查有关JLS儿科患者心理社会并发症的流行率和类型的文献.
- 评估JLS对健康相关生活质量 (HRQoL),心理社会功能,自我认知和治疗负担的影响.
主要方法:
- 对2000年至2020年间发表的研究进行系统性文献综述.
- 在PubMed,EMBASE,Cochrane和CINAHL搜索了有关JLS,形态和儿科患者心理社会结果的研究.
- 包括定量和定性数据合成.
主要成果:
- 包括13项涉及690名儿科患者的研究.
- 定量研究显示,HRQoL的统计学上显著损害很少或不存在.
- 定性研究 (重点小组) 显示了与JLS症状和治疗相关的显著的心理社会影响,包括压力,自尊心下降,社会耻辱和欺凌.
结论:
- 虽然定量测量可能没有显示出显著的HRQoL赤字,但定性数据突出显示了JLS的实质性心理社会挑战.
- 需要一个特定于JLS的工具来准确评估受影响儿童的HRQoL.
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