**Background:** Irritable bowel syndrome (IBS) is a prevalent functional gastrointestinal disorder affecting 10–25% of the community globally, with a meta-analysis showing global prevalence at 11.2%. In China, the prevalence appears to be rising, with a previous survey of medical and engineering students in Zhejiang Province finding an overall incidence of 6.90% based on Rome III criteria. Despite its high prevalence, IBS pathophysiology is incompletely understood, and there is a lack of established therapeutic options. Chinese culture, strongly influenced by Confucianism, differs greatly from Western cultures, yet similar studies from China on patient perspectives have been lacking. The study aimed to explore the perspectives, experiences, and concerns of Chinese IBS patients using social media data.
**Methods:** The researchers collected posts from Baidu Tieba's IBS-Bar community, the largest Chinese online community, which had over 10,000 followers and more than 150,000 posts and replies as of May 20, 2022. Using Python-based web crawling with 'request' and 'selenium' packages, 26,419 records were extracted from posts published between December 6, 2009, and May 20, 2022. After data cleaning—removing blank lines, duplicate text, special symbols, numbers, letters, texts with string lengths less than 10, advertised posts, and posts unrelated to IBS—5,746 high-quality posts remained for analysis. The study employed two analytical methods: Latent Dirichlet allocation (LDA) topic modeling using the Gensim package with Jieba for Chinese word segmentation, and grounded theory analysis of 200 randomly selected posts using NVivo12 Plus software. Coherence scores were calculated from 1 to 60 topics to determine the optimal number of topics, ultimately selecting 20 topics. The research team included clinicians and nursing staff, with trustworthiness established through triangulation and peer checking by two gastroenterologists.
**Key Results:** LDA analysis generated 20 topics. The most prevalent topic was discussions surrounding diagnosis and symptoms (mean share within posts = 24.2%), followed by examination (13.7%) and diagnosis (13.5%). Emotional problems were the fourth most prevalent topic (12.2%). Other topics included drug resistance (10.1%), complaints about life (10%), medication experience (3.7%), Traditional Chinese medicine (2.8%), alarming symptoms (2.5%), mechanism (1.7%), probiotics (1.3%), peer support (0.8%), diet (0.8%), sport (0.6%), women (0.5%), social impact (0.4%), expert support (0.4%), study and work (0.4%), and nutrition (0.3%). Grounded theory identified eight preliminary themes: seeking disease information, drug resistance/ineffectiveness, lack of home help, avoiding social events, stigma in women with IBS, Traditional Chinese Medicine, seeking professional IBS hospitals/doctors, and desire to improve quality of life. Combining both methods, five overarching themes emerged: difficulty in obtaining disease information (51.4% of posts), serious psychosocial problems (23.5%), dissatisfaction with treatment (14.2%), lack of social support (4.9%), and low quality of life (6%). Notably, the grounded theory analysis revealed an additional important topic not prominent in LDA: stigma in women with IBS, with patients expressing embarrassment about telling family members.
**Clinical Implications:** This study provides a comprehensive, patient-centric understanding of Chinese IBS patients' experiences and perceptions over a 12-year period. The findings reveal that only 22% of Chinese IBS patients visit doctors, compared to 40% globally, suggesting a tendency toward self-diagnosis that could introduce treatment errors. The significant psychosocial burden—including emotional problems, social isolation, and stigma—underscores the need for integrated mental health support alongside gastrointestinal care. The high prevalence of drug resistance concerns (10.1%) and dissatisfaction with treatment aligns with previous US findings where less than a third of patients were satisfied with treatment effects. The study also highlights cultural differences, such as Chinese patients' high hopes for Traditional Chinese Medicine and microbiota treatments, and the lack of family support, which differs from Western studies. The findings can facilitate doctor-patient communication, help medical staff anticipate patient concerns during treatment, and assist in formulating medical policies tailored to Chinese IBS patients. The study acknowledges limitations including potential inclusion of non-IBS gastrointestinal symptoms, exclusion of non-social media users, lack of comparative data from other cultural backgrounds, and inability to complete member checks due to the social media-based methodology.