摘要
目的了解罕见骨骼疾病患者及家属获取罕见病相关健康信息的现状及需求。方法借助问卷星自拟调查问卷,通过罕见骨骼疾病公益组织开展线上调查。收集信息包括罕见病相关健康信息的获取途径与需求建议。结果共收集有效问卷199份,涉及10种罕见骨骼疾病。76.38%的问卷由患者家属填写,有84.92%的患者或家属选择网络平台(手机、电脑等)获取健康信息,其中搜索引擎(66.86%)和微信公众号(63.31%)使用最为频繁。有85.05%的患者或家属关注了1~3个罕见病公众号,最受关注的罕见病公众号健康信息前三位分别是诊疗知识(91.59%)、相关政策(83.18%)和公益活动(73.83%),而患者最希望增加的信息内容前三位则是相关政策(82.24%)、诊疗知识(75.70%)和前沿资讯(74.77%)。结论目前罕见骨骼疾病患者及家属主要通过网络平台获取健康信息,需求集中在政策、诊疗知识及前沿资讯上,未来需加大对这三方面的关注。
Objective To describe the current status and needs of patients with rare bone diseases and their families in obtaining health information.Methods We developed a self-designed questionnaire by Wenjuanxing,and conducted an online survey through a non-profit organization of rare bone diseases.The information collected included access and needs/recommendations about health information related to rare bone diseases.Results A total of 199 valid questionnaires were collected,with 10 rare bone diseases involved.76.38%of the questionnaires were filled out by family members of patients.The patients or their families who chose online platforms(mobile phones,computers,etc.)to obtain health information accounted for 84.92%,and the search engine(66.86%)and WeChat Official Accounts(63.31%)were used most frequently.85.05%of the patients or their families followed 1 to 3 WeChat Official Accounts of rare disease.The top three health information focus on WeChat Official Accounts were diagnosis and treatment knowledge(91.59%),related policies(83.18%),and public welfare activities(73.83%),in turn,and the top three that patients most wanted to increase were related policies(82.24%),diagnosis and treatment knowledge(75.70%),and cutting-edge information(74.77%).Conclusions Patients with rare bone diseases and their families mainly obtain health information through online platforms,with greater needs on policies,diagnosis and treatment knowledge and the cutting-edge information,and providers should focus more precisely on these three aspects in the future.
作者
刘立立
贺冰洁
陈暐烨
孙月
单为如
张志军
王胜锋
詹思延
LIU Li-li;HE Bing-jie;CHEN Wei-ye;SUN Yue;SHAN Wei-ru;ZHANG Zhi-jun;WANG Sheng-feng;ZHAN Si-yan(Department of Epidemiology and Biostatistics,School of Public Health,Peking University,Beijing 100191 China;Shenzhen 01 rare bone diseases care center,Shenzhen 518000,China)
出处
《中华疾病控制杂志》
CAS
CSCD
北大核心
2020年第10期1219-1223,共5页
Chinese Journal of Disease Control & Prevention
基金
国家自然科学基金重大研究计划培育项目(91646107)。
关键词
罕见骨骼疾病
健康信息
获取途径
需求
Rare bone diseases
Health information
Acquiring ways
Needs
