Patients’ perspectives on, experience with and concerns about crohn's disease: insights from Chinese social media

Abstract Aim The aim of this study was to explore the experience and perceptions of patients with Crohn’s disease in China. Methods Data mining was used to investigate posts in Crohn’s disease online medical communities. The data were collected through the crawler code, and latent Dirichlet allocation (LDA) and grounded theory were used to mine the theme features after data cleaning. Results In analyzing the topic characteristics of online posts, LDA divided 6757 posts into 15 topics on four aspects: seeking disease information, making decisions on medication use, psychological burden, and communicating about diet and nutrition. Conclusion Overall, social media is patient-centric and helps us better understand the experiences and perceptions of patients. This study can help medical staff predict the thoughts and concerns of Crohn's disease patients during the treatment process, facilitate doctor-patient communication, and assist in the formulation of medical policies.