[A cross-sectional study on current status of rare disease related health information based on WeChat official...

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.