Patients’ perspectives on irritable bowel syndrome: a qualitative analysis based on social media in China

AIM: To explore the perspectives, experience, and concerns of patients with irritable bowel syndrome (IBS) in China. METHODS: We used data mining to investigate posts shared in Baidu Tieba concerned with IBS; we collected the data through the crawler code, and mined the cleaned data’s themes based on Latent Dirichlet allocation (LDA) and the Grounded theory. RESULTS: We found 5746 network posts related to IBS. LDA analysis generated 20 topics, and grounded theory analysis established eight topics. Combining the two methods, we finally arranged the topics according to five concepts: difficulty in obtaining disease information; serious psychosocial problems; dissatisfied with the treatment; lack of social support; and low quality of life. CONCLUSION: Social media research improved patient-centric understanding of patients’ experiences and perceptions. Our study may facilitate doctor-patient communication and assist in the formulation of medical policies. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-023-03417-x.