从事罕见病工作医生状况调查及对罕见病人才培养的初步探讨  

Survey on the Working Conditions of Doctors Engaged in Rare Diseases and Initial Discussion on Talent Training

作　　者：张磊[1] 邹林峰 纪培丽 陈丽萌[1] ZHANG Lei;ZOU Linfeng;JI Peili;CHEN Limeng(Department of Nephrology,Peking Union Medical College Hospital,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China;Department of Internal Medicine,Peking Union Medical College Hospital,Chinese Academy of Medical Sciences&Peking Union Medical College,Beijing 100730,China)

机构地区：[1]中国医学科学院北京协和医院肾内科,北京100730 [2]中国医学科学院北京协和医院内科,北京100730

出　　处：《罕见病研究》2024年第3期400-404,共5页Journal of Rare Diseases

基　　金：中国医学科学院医学与健康科技创新工程项目(2021-I2M-1-003);中央高水平医院临床科研业务费(2022-PUMCH-B-019);北京市示范性研究型病房建设项目(BCRW202001)。

摘　　要：背景近年来,罕见病已成为重大公共卫生问题,亟须提高该类疾病诊疗水平,而其中关键一环就是罕见病人才的培养。方法本研究通过对北京协和医院从事罕见病诊治的专科医生进行问卷调查,并与非从事罕见病工作的医生做比较,了解其人员特征,评估其心理和工作状态。结果本研究共回收从事罕见病工作的医生问卷95份,其中女性∶男性为1.6∶1,以40~54岁年龄组为主(63.2%),享受研究罕见病的过程为最主要的选择从事罕见病工作的原因(64.2%)。与同期调查的108名非从事罕见病工作的医生相比,自我评价工作得到患者认可度更高(P<0.001)。用时较多的工作内容除常规医教研工作外,还有34.7%选择了医患沟通,31.6%选择了医疗管理沟通工作。结论本研究通过分析从事罕见病工作医生的问卷调查结果,对罕见病人才培养过程、继续教育平台的搭建、所需技术和政策支持提出了一些思考和建议。Background In recent years,rare diseases have become a major public health issue.There is an urgent need to improve the diagnosis and treatment for these diseases,and the training for doctors engaged in rare diseases is an important part of it.Methods This study conducted a questionnaire survey on the doctors engaged in rare diseases in Peking Union Medical College Hospital to better understand their characteristics and evaluate their psychological and working status.Results A total of 95 questionnaires from doctors engaged in rare diseases were collected in this study,among which the female∶male ratio was 1.6∶1,and 63.2%of them were in the 40-54 age group.Their main reason for choosing rare diseases was the enjoyment in the process of studying rare diseases(64.2%).Compared with the 108 doctors not engaged in rare diseases surveyed during the same period,those working on rare diseases reported higher patient recognition based on self-evaluation(P<0.001).In terms of the time-consuming work,in addition to routine medical work,teaching and research,34.7%of doctors engaged in rare diseases chose doctor-patient communication and 31.6%chose medical management communication.Conclusions This study proposes some suggestions on the talent training for rare diseases,the establishment of continuing education platforms,and the technology and policy support needed through the analysis of the questionnaire survey results of doctors engaged in rare diseases.

关 键 词：罕见病 问卷调查 医院继续教育 人才培养 

分 类 号：R-05[医药卫生] R192.3