成年后的儿童间歇性肺病幸存者:欧洲合作研究
Effrosyni D Manali1, Matthias Griese2, Nadia Nathan3,4,5
12nd Pulmonary Medicine Department, General University Hospital "Attikon", Medical School, National and Kapodistrian University of Athens, Athens, Greece fmanali@otenet.gr.
The European respiratory journal
|December 5, 2024
概括
儿童间歇性肺病幸存者往往有显著的肺功能损失,需要专业的成人护理. 重新评估诊断和治疗方法可以改善这些复杂的儿科间歇性肺病患者的管理.
科学领域:
- 肺部病理学 肺部病理学
- 儿科医学 儿科医学
- 内部医学 内部医学
背景情况:
- 儿童间歇性肺病 (chILD) 是罕见的,但越来越多的诊断.
- 儿童的预后历来很差,但进入成年人的生存率正在改善.
- 这项研究描述了CHILD幸存者及其对成人护理的影响.
研究的目的:
- 描述童年间歇性肺病幸存者的特征.
- 为了确定CHILD幸存者对成年间歇性肺病中心的影响.
- 了解从儿科到成人环境的护理过渡.
主要方法:
- 一项涉及34个成人和儿童中心的欧洲研究.
- 从事件/流行性CHILD幸存者收集的流行病学,临床,生理和遗传数据 (2023年1月至7月).
- 分析了244名确诊患者的数据.
主要成果:
- 244名儿童幸存者在平均年龄为12.5岁时被诊断出患病,在纳入研究时的平均年龄为25岁.
- 显著的肺功能障碍:预测FVC的中位数%为70%,DLCO为48%.
- 大多数患者 (93%) 转移到成人中心,常见的诊断包括沙尔科毒症,表面活性剂相关疾病和未分类的CHILD;60%仍在服用皮质类固醇.
结论:
- 儿童幸存者经常在成人间歇性肺病中心进行管理,肺功能显著丧失.
- 儿童病因和治疗方法的异质性影响了成人中心.
- 重新规范诊断和治疗对于个性化管理CHILD幸存者至关重要.
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