基于“中心—多学科诊疗团队”架构的综合医院罕见病管理探索  

Practices on“Center Multidisciplinary Team”Structure for Rare Disease Management in General Hospitals

作　　者：庄昱 钟源 吴昕霞[1] 胥雪冬[1] 穆荣 朱小辉[1] 李蓉[1] 付卫[1] Zhuang Yu;Zhong Yuan;Wu Xinxia(Peking University Third Hospital,Bejjing,100191,China;不详)

机构地区：[1]北京大学第三医院,北京100191

出　　处：《中国医院管理》2024年第9期37-40,共4页Chinese Hospital Management

基　　金：国家卫生健康委医院管理研究所医疗质量循证管理研究项目(YLZLXZ22G024)。

摘　　要：目的对基于“中心—多学科诊疗团队”架构的综合医院罕见病管理模式进行初步研究。方法采用间断时间序列等分析方法,对样本医院2021—2023年出院的罕见病患者基本情况、相关医疗服务量进行了测量。结果2021—2023年,样本医院共为19825人次的罕见病患者提供住院服务,患者主诊断为罕见病的占比约为27%。经间断时间序列分析,2022年罕见病诊治中心成立当月,罕见病患者占比的预期值瞬时提高1.89个千分点,提示医院罕见病诊断能力显著提高。面向罕见病患者的生物信息学分析服务量呈现出增长趋势。结论基于“中心—多学科诊疗团队”架构的罕见病管理模式,可在不明显增加医院投入负担的条件下,提高医务人员对罕见病的关注程度,强化罕见病诊断能力,患者管理更加连续,学科合作更加高效。Objectives It was a preliminary exploration on rare disease management of comprehensive hospital based on the“Center-Multidisciplinary Team”structure.Methods By applying interrupted time series analysis,the characteristics and related medical service of rare disease patients discharged from sample hospitals from 2021 to 2023 were measured.Results The results showed that the hospital served 19825 rare disease patients from 2021 to 2023.The proportion of patients whose main diagnosis were rare diseases was approximately 27%.The interrupted time series technique indicated that the expected proportion of rare disease patients increased instantly by 1.89 thousand points.The capability to diagnose has significantly improved,with a growing trend on volume of bioinformatics analysis services for rare diseases pa tients.Conclusion The rare disease management based on the“Center-Team”structure can increase the attention of medical staff to rare diseases,strengthen the diagnostic capacity of rare diseases,and make patient management more continuous and disciplinary CO-operation more efficient without significantly increasing the input burden on hospitals.

关 键 词：综合医院 罕见病中心 多学科诊疗团队 间断时间序列分析 

分 类 号：R197.323.2[医药卫生—卫生事业管理]