摘要
目的:了解我国基于微信公众号的罕见病健康信息环境的现况。方法:以"罕见病"和住院例次处于我国前30位的罕见病名称为关键词进行检索,结合纳入排除标准筛选公众号,并对纳入公众号的文章进行等距抽样,评估每个公众号和推送文章的基本信息。结果:研究所关注30种罕见病中,有14种未发现相关公众号。患者及患者组织发起的公众号占主要部分(52.17%)。中医类和非中医类公众号在发文数量上差异无统计学意义,但中医类公众号每月发文频数高于非中医类公众号(P<0.001),而阅读量却低于非中医类公众号(P<0.001)。近80%的公众号设置有菜单栏,且这类公众号的文章平均累计阅读量高于未设置者。文章总数量位于前3的分别是罕见病诊疗相关知识(46.00%)、罕见病公益活动(12.81%)、非罕见病相关的具体内容(8.65%),而文章阅读量前3位的类别是前沿资讯、罕见病公益活动和患者故事。结论:基于微信公众号的罕见病健康信息传播模式已初具规模,但仍处于发展期,在罕见病覆盖范围、推送频率、内容和形式方面仍存在可完善之处。我国急需建立或改造出一些高质量的专业微信公众号,加强精准化信息供给,促进罕见病防治。
Objective To understand the current status of rare disease related health information release in WeChat official accounts in China.Methods We used a series of key words containing"rare diseases"and the names of the top 30 rare diseases in hospitalizations in China to search WeChat official accounts.Eligible articles were selected by systematic sampling.All including WeChat official accounts and articles were evaluated to extract the basic information.Results No relevant WeChat official accounts were found for 14 rare diseases(46.67%).Most of the WeChat official accounts(52.17%)were initiated by patients and patient groups.No significant difference was detected in the total number of articles between the official accounts related with Traditional Chinese Medicine(TCM)and non-TCM related ones,however,the frequency of the monthly information release was significantly higher in TCM related official accounts(P<0.001),while the average reading number of articles was significantly higher in non-TCM related official accounts(P<0.001).Nearly 80%of the WeChat official accounts had navigation menu,and the average reading number of official accounts with menus was larger than those without menus.The top three topics were rare disease diagnosis and treatment knowledge(46.00%),public welfare activity for rare diseases(12.81%)and uncorrelated things(8.65%),while the first three leading topics were cutting-edge information,public welfare activity and patient story,respectively.Conclusions The scale for rare disease related health information release based on WeChat official accounts in China has been basically formed,but it is still in development stage.Many improvements should be made in their coverage of rare diseases,release frequency,topic and form.It is urgent to establish or recreate some high-quality WeChat official accounts in order to provide precise information and effectively facilitate the prevention and treatment of rare diseases.
作者
刘立立
赖雪峰
许璐
冯菁楠
贺冰洁
邹思雨
陈暐烨
王胜锋
詹思延
Liu Lili;Lai Xuefeng;Xu Lu;Feng Jingnan;He Bingjie;Zou Siyu;Chen Weiye;Wang Shengfeng;Zhan Siyan(Department of Epidemiology and Biostatistics,School of Public Health,Peking University,Beijing 100191,China)
出处
《中华流行病学杂志》
CAS
CSCD
北大核心
2020年第3期446-451,共6页
Chinese Journal of Epidemiology
基金
国家自然科学基金(91646107)。
关键词
罕见病
微信公众号
健康信息
Rare disease
WeChat official account
Health information
