对性别发育差异的儿童和青少年提供标准化的多学科护理:健康智能方法
Lieve A Willemsen1,2,3,4,5, Matthijs Stoter2, Emmy van den Boogaard3,5,6
1Department of Pediatric Endocrinology, Emma Children's Hospital, Amsterdam UMC location University of Amsterdam, 1105 AZ, Amsterdam, The Netherlands.
一个新的健康情报计划为性别发育差异 (DSD) 的儿童提供结构化,多学科的护理. 这一框架使得数据驱动的洞察力能够改善长期结果和对罕见的DSD疾病的研究.
科学领域:
- 儿科内分泌学 儿科内分泌学
- 遗传学 是一个遗传学.
- 医疗信息学 医疗信息学
背景情况:
- 对性别发育差异 (DSD) 个体的长期结果数据有限,需要标准化,纵向,多学科的护理.
- 目前的共识强调对罕见的DSD疾病进行系统的结果评估,以改善医疗保健和研究.
研究的目的:
- 描述一个结构化,多学科的后续计划的设计和实施,用于儿童患者DSD.
- 整合一个健康情报方法,以数据驱动的护理和研究在第三级护理环境.
主要方法:
- 在阿姆斯特丹UMC,艾玛儿童医院开发了一个项目,作为Follow Me计划的一部分.
- 使用ICD-10代码识别患者,将他们分类为XX/XY DSD,特纳综合征和性别染色体三症组 (SCT).
- 与多学科的DSD团队 (MDT) 创建了标准化的护理途径,并建立了一个自动化数据管道,以确保临床数据的安全传输.
主要成果:
- 为队列识别和结构化,多学科的护理途径建立了一个可重复的框架.
- 实施了用于临床结果收集和监测的自动化数据基础设施.
- 包括2024年1月620名儿科患者 (18岁以下),交互式仪表板可视化MDT会议和护理评估的实时结果.
结论:
- 展示了多学科护理与DSD护理中的数据驱动医学的健康智能集成.
- 促进一致的,高质量的护理,为临床评估,创新和研究产生有价值的数据.
- 介绍了标准化,长期DSD护理的框架,通过健康智能提高质量和推动创新.
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