德国对性别发育差异 (DSD) 患者的护理质量
Maike Schnoor1, Andreas Heidenreich2, Martina Jürgensen3
1Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany. maike.schnoor@uksh.de.
通过定义指标和基准测试,DSDReg注册改善了性别发展差异 (DSD) 患者的护理质量. 持续的数据收集和分析是提高终身DSD护理的关键.
科学领域:
- 医疗质量管理 医疗质量管理
- 罕见疾病是一种罕见的疾病.
- 患者登记册 患者登记册
背景情况:
- 性发育差异 (DSD) 个体需要专门的终身护理.
- 目前的DSD护理的感知不足需要质量改进举措.
- 由德国联邦卫生部资助的DSDCare项目旨在提高DSD护理质量.
研究的目的:
- 为质量评估建立一个DSD特定的注册表 (DSDReg).
- 定义和实施结构性,流程和结果措施的质量指标.
- 促进对DSD患者进行基准测试,并提高对DSD患者的护理质量.
主要方法:
- 基于OSSE平台开发一个DSD专用注册表 (DSDReg).
- 定义了25个结构质量指标,12个过程质量指标和10个结果质量指标.
- 每年通过问卷收集结构数据和患者报告的结果.
主要成果:
- DSDReg注册了477名患者 (2021年5月至2022年10月);平均年龄为16岁.
- 常见的诊断包括46,XY DSD (34.8%),46,XX DSD (33.3%) 和染色体 DSD (27.5%).
- 初步数据显示数据质量和护理的中心间变化.
结论:
- DSDReg是DSD护理的有效质量保证工具.
- 质量指标适用,并促进中心间的比较.
- 建议长期继续使用注册表,以维持护理的改善.
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