1885例罕见病住院患者特征分析  

Characteristics of 1 885 rare disease inpatients

作　　者：张欣欣[1] 张文[1] 聂晓瑛 许莹 孔德莹 李汶嘉 郭咿玮 张蓓蕾 王彬翀[1] ZHANG Xinxin;ZHANG Wen;NIE Xiaoying;XU Ying;KONG Deying;LI Wenjia;GUO Yiwei;ZHANG Beilei;WANG Binchong(First Affiliated Hospital of Xi'an Jiaotong University,Xi’an 710061,China;Shaanxi Rehabilitation Hospital,Xi’an 710065,China)

机构地区：[1]西安交通大学第一附属医院,陕西西安710061 [2]陕西省康复医院,陕西西安710065

出　　处：《现代医院》2024年第12期1916-1920,共5页Modern Hospitals

基　　金：陕西省自然科学基础研究计划青年项目(2022JQ-750);西安市科技计划项目(21YXYJ0112)。

摘　　要：目的 分析某三甲医院2023年1月1日—12月31日收治的1 885例罕见病住院患者基本特征,为罕见病诊疗管理及政策制定提供借鉴。方法 基于某三甲医院2023年罕见病住院患者病案首页数据,分析罕见病住院患者基本特征和住院费用结构。结果 2023年,医院共收治罕见病住院患者1 885例次,占出院患者总数的0.81%,男女比例接近1∶1。60岁以上患者占比45.57%,其次是45~59岁患者(26.47%),排第三位的为19~44岁患者(20.9%),18岁以下患者占比较少。罕见病病种共覆盖11个疾病分类系统80个病种,占罕见病目录病种的38.65%。前十位病种占患者总数的70.56%,前三位病种分别为进行性纤维化性间质性肺疾病、特发性肺纤维化及原发性胆汁性胆管炎。1岁以下患者占比0.08%,2~18岁患者占比5.19%,19~44岁患者占比19.55%,45~59岁患者占比26.62%,60岁以上患者占比48.57%。特发性肺纤维化、肌萎缩侧索硬化、大动脉炎/多发性大动脉炎及原发性胆汁性胆管炎四种疾病男女比例差异较大。从费用结构看,前十位的罕见病诊断费、药费及耗材费占比普遍较高。结论 该院罕见病住院患者中成年患者所占比例较高且病种覆盖较广,罕见病患者男女比例相当但病种特点不同,罕见病自身特点决定了其住院费用结构特点。医院应完善学科建设,提供更多的罕见病诊疗资源;制定罕见病诊疗指南,加强医生培训,实现罕见病患者早诊断、早治疗。同时,国家应继续推进罕见病用药的可及性。Objective To analyze the basic characteristics of 1885 inpatients with rare diseases in a 3A hospital from January 1 to December 31,2023,so as to provide reference for the management of diagnosis and treatment of rare diseases and the formulation of policies.Methods Based on the medical record homepage data of rare disease inpatients in a tertiary hospital in 2023,analyze the basic characteristics and hospitalization cost structure of rare disease inpatients.Results The hospital admitted 1 885 inpatients with rare diseases in 2023,accounting for 0.81% of the total number of discharged patients,with a male-to-female ratio close to 1 ∶1.Patients aged over 60 accounted for 45.57%,followed by patients aged 45-59(26.47%),patients aged 19-44(20.9%) ranked third,and patients under 18 accounted for less.Rare diseases cover 11 disease classification systems and including 80 diseases,which accounts for 38.65% of the rare diseases in the catalogue.The top ten diseases accounted for 70.56% of the total number of patients,and the top three diseases were progressive fibrosing interstitial lung disease,idiopathic pulmonary fibrosis and primary biliary cholangitis.Patients under 1 year old accounted for 0.08%,patients aged 2-18 years accounted for 5.19%,patients aged 19-44 years accounted for 19.55%,patients aged 45-59 years accounted for 26.62%,and patients over 60 years old accounted for 48.57%.There was a large difference in the male-female ratio in four diseases:idiopathic pulmonary fibrosis,amyotrophic lateral sclerosis,Takayasu's arteritis,and primary biliary cholangitis.From the perspective of cost structure,the top ten rare diseases account for a high proportion of diagnosis fees,medicine fees and consumables fees.Conclusion Patients account for a high proportion of rare disease inpatients in the hospital and have a wide coverage of disease types.The overall male-female ratio of patients with rare diseases is similar,but the characteristics of the diseases are different.The characteristics of rare diseases determine th

关 键 词：罕见病 住院患者 病种 费用 特征 

分 类 号：R197.323[医药卫生—卫生事业管理] R181.2[医药卫生—公共卫生与预防医学]