子宫内膜异位症长期管理工具接受和需求情况调查  

Acceptability and demand for tools for the long-term management of endometriosis

作　　者：刘瑞雪 赵瑞华[1] 廖星[2] 彭超[3] 金华 武颖[5] 韩倩 孙伟伟[1] LIU Ruixue;ZHAO Ruihua;LIAO Xing;PENG Chao;JIN Hua;WU Ying;HAN Qian;SUN Weiwei(Department of Gynecology,Guang’anmen Hospital,China Academy of Chinese Medical Science,Beijing 100053,China;Basic Research Office of Evidence-based Medicine,Institute of Basic Research in Clinical Medicine,China Academy of Chinese Medical Sciences,Beijing 100700,China;Department of Gynecology,Peking University First Hospital,Beijing 100034,China;Department of Gynecology,Beijing Friendship Hospital,Capital Medical University,Beijing 10050,China;Department of Acupuncture,Beijing Obstetrics and Gynecology Hospital,Capital Medical University,Beijing 100010,China;Department of Traditional Chinese Medicine,Beijing Obstetrics and Gynecology Hospital,Capital Medical University,Beijing 100010,China)

机构地区：[1]中国中医科学院广安门医院妇科,北京100053 [2]中国中医科学院中医临床基础医学研究所循证医学基础研究室,北京100700 [3]北京大学第一医院妇科,北京100034 [4]首都医科大学附属友谊医院妇科,北京100050 [5]首都医科大学附属北京妇产医院针灸科,北京100010 [6]首都医科大学附属北京妇产医院中医科,北京100010

出　　处：《中国医药导报》2024年第36期90-95,共6页China Medical Herald

基　　金：首都卫生发展科研专项项目(首发2022-1-4152);中国中医科学院创新工程项目(CI2021A02401)。

摘　　要：目的调查子宫内膜异位症(EM)患者对长期管理工具的接受情况及功能、内容需求,了解患者需求,为EM长期管理工具的设计开发提供参考。方法自行编制问卷,对2023年5月至2024年1月在中国中医科学院广安门医院、首都医科大学附属友谊医院、首都医科大学附属妇产医院、北京大学第一医院门诊或病房就诊的EM患者进行调查,收集患者一般资料、EM长期管理工具接受情况及工具功能、内容需求。结果共252例EM患者参与调查,年龄(34.12±6.37)岁,病程(40.06±18.95)个月。绝大多数患者(247/252,97.62%)能够接受EM长期管理工具,最主要的原因是“可以节约时间,提高效率,例如减少来往医院的麻烦,减少排队挂号的麻烦”,极少数患者(6/252,2.38%)由于“担心个人信息泄露”和“消息提醒会打扰到我”等原因不愿接受工具。APP是最期望的工具形式。管理工具中各项功能和不同内容的需求度均很高。结论EM患者对长期管理工具的接受度很高,工具的开发设计首先要确保安全隐私,同时要求功能综合多样、操作便捷,内容上首先保证准确性和全面性,同时通俗易懂、生动有趣,根据不同患者的需求,将内容分层次、分阶段、分类别,实现工具内容的个体化。Objective To investigate the acceptance of long-term management tools and demand for functions and contents of endometriosis(EM)patients,to obtain the needs of patients,and to provide a reference for the design and development of long-term management tools for EM.Methods Self-developed questionnaires were administered to EM patients attending outpatient clinics or wards at Guang’anmen Hospital,China Academy of Chinese Medical Science,Beijing Friendship Hospital,Capital Medical University,Beijing Obstetrics and Gynecology Hospital,Capital Medical University,and Peking University First Hospital from May 2023 to January 2024,general information about the patients,acceptance of EM long-term management tools,and the functionality and content needs of the tools were collected.Results A total of 252 EM patients,aged(34.12±6.37)years,the course was(40.06±18.95)months,participated in the survey.The majority of patients(247/252,97.62%)were able to accept the EM long-term management tool,with the most important reason being“it could save time and improve efficiency,such as reducing the trouble of traveling to and from the hospital and queuing up for registration”,while a very small number of patients(6/252,2.38%)were reluctant to accept the tool due to reasons such as“worrying about personal information leakage”and“message alerts will disturb me”,etc.APP was the most desired form of the tool.The demand for each function and different contents in the management tool were high.Conclusion EM patients’acceptance of long-term management tools is high,the development and design of the tool should be first to ensure security and privacy,while requiring comprehensive and diverse functions and convenient operation,and the content should first ensure accuracy and comprehensiveness,as well as be easy to understand,vivid and interesting,and the content should be divided into levels,phases,and categories according to the needs of different patients to achieve the individualization of the tool’s content.

关 键 词：子宫内膜异位症 工具 需求 长期管理 

分 类 号：R711.71[医药卫生—妇产科学]