Nowadays internet and social media community have provided a great amount of information for patients with inflammatory bowel disease (IBD). We aimed to assess the sources and needs of Chinese IBD patients through the internet and their impact on disease management.Methods
Between November 24, 2017 and March 1, 2018. Totally 414 questionnaires were recruited online from seven different large urban hospitals in China. Internet usage, IBD knowledge and medication adherence were examined. One-way ANOVA, student t-tests and multivariate regression were used for statistical analysis.Results
In all, 382 surveys were used for analysis, in which 291 (76.2%) had Crohn’s disease (CD), 74 (19.4%) ulcerative colitis (UC) and 17 (4.5%) undetermined colitis. The most common IBD-specific information sources were gastroenterologists (81.7%), Internet (58.6%), and WeChat or other social media (48.7%). Patients most frequently visited Baidu (65.2%), WeChat (58.9%) and Haodaifu network platform (33.2%) for personal information searching of IBD. Among ten WeChat public accounts of IBD, the China Crohn’s and Colitis Foundation (CCCF) (69.1%) and Changzaixin (20.2%) were most popular. A significant association was found between education (PP=0.003), frequent internet use in IBD-related information (PPP=0.003) and also had better medication adherence than undetermined patients (p=0.009). The majority of patients preferred obtaining information mainly through communication with (77.7%) or reference in the paper from IBD specialists (73%), only 18.6% patients preferred mainly from internet searching by themselves. They were interested in information about diet and daily life health care of IBD (81.2%), disease aetiology and course (80.1%), and medication advances and side effects (78.5%) from the Internet.Conclusions
Internet and social media like WeChat have become the major information source for IBD education in China. This is beneficial to gain disease-related knowledge and improve future self-management for patients. Future initiatives should focus on providing more high-quality IBD information and increase interaction in patient education and disease organisation.