基于北京地区电子医疗数据的儿童系统性红斑狼疮流行病学、临床特征及治疗模式研究

徐嘉瑞, 王予童, 王胜锋, 钟旭辉, 姜玉武, 丁洁

中国当代儿科杂志 ›› 2026, Vol. 28 ›› Issue (9) : 1078-1085.

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中国当代儿科杂志 ›› 2026, Vol. 28 ›› Issue (9) : 1078-1085. DOI: 10.7499/j.issn.1008-8830.2603074
论著·临床研究

基于北京地区电子医疗数据的儿童系统性红斑狼疮流行病学、临床特征及治疗模式研究

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Epidemiology, clinical characteristics, and treatment patterns of pediatric systemic lupus erythematosus based on regional electronic healthcare data in Beijing

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摘要

目的 探索近年来北京地区儿童系统性红斑狼疮(systemic lupus erythematosus, SLE)的疾病演变趋势。 方法 基于北京市医院质量监测系统、北京市电子病历共享工程30家试点医院电子医疗数据,分析2015年6月—2023年5月儿童SLE流行病学特征、临床特征及治疗模式的变化。 结果 共纳入4 197例SLE患儿,其中男性874例(20.82%),2016年5月31日之后起病的3 361例患儿中位发病年龄为12岁。2016—2022年度北京地区0~14岁儿童SLE发病率由2.91/100 000人上升至6.02/100 000人。2015—2022年度SLE住院患儿的肾脏(RR=1.02)、血液系统(RR=1.16)等脏器损害发生率均呈显著上升趋势(P<0.05);环磷酰胺使用率从59.8%下降至29.0%(P<0.05),而羟氯喹(RR=1.09)、吗替麦考酚酯(RR=1.11)及他克莫司(RR=1.29)使用率显著上升(P<0.05)。 结论 2015—2022年度,北京地区儿童SLE发病率升高,住院患儿脏器损害负担加重,儿童SLE的治疗模式发生明显改变。

Abstract

Objective To explore recent temporal trends in pediatric systemic lupus erythematosus (SLE) in Beijing. Methods Electronic health record data were extracted from the Beijing Hospital Quality Monitoring System and the Beijing Electronic Medical Record Sharing Project (30 pilot hospitals). Changes in epidemiology, clinical characteristics, and treatment patterns were analyzed for the period June 2015 to May 2023. Results A total of 4 197 pediatric SLE patients were included, of whom 874 (20.82%) were male. Among 3 361 children with disease onset after May 31, 2016, the median age at onset was 12 years. From 2016 to 2022, the incidence of SLE among children aged 0-14 years in Beijing increased from 2.91 to 6.02 per 100 000. From 2015 to 2022, the incidence of renal (RR=1.02) and hematologic (RR=1.16) damage in hospitalized children showed a significant upward trend (P<0.05). Over the same period, cyclophosphamide use declined from 59.8% to 29.0% (P<0.05), while the use of hydroxychloroquine (RR=1.09), mycophenolate mofetil (RR=1.11), and tacrolimus (RR=1.29) increased significantly (P<0.05). Conclusions In Beijing, data from 2015-2022 indicate a rising incidence of pediatric SLE, an increasing burden of organ damage among hospitalized patients, and marked shifts in treatment patterns.

关键词

系统性红斑狼疮 / 真实世界数据 / 流行病学 / 治疗模式 / 儿童

Key words

Systemic lupus erythematosus / Real-world data / Epidemiology / Treatment pattern / Child

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导出引用
徐嘉瑞, 王予童, 王胜锋, . 基于北京地区电子医疗数据的儿童系统性红斑狼疮流行病学、临床特征及治疗模式研究[J]. 中国当代儿科杂志. 2026, 28(9): 1078-1085 https://doi.org/10.7499/j.issn.1008-8830.2603074
Jia-Rui XU, Yu-Tong WANG, Sheng-Feng WANG, et al. Epidemiology, clinical characteristics, and treatment patterns of pediatric systemic lupus erythematosus based on regional electronic healthcare data in Beijing[J]. Chinese Journal of Contemporary Pediatrics. 2026, 28(9): 1078-1085 https://doi.org/10.7499/j.issn.1008-8830.2603074

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脚注

所有作者声明不存在任何潜在的利益冲突。

基金

国家重点研发计划资助(2022YFC2705100)
国家重点研发计划资助(2022YFC2705104)

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