Patients' Real-World Experiences With Pharmacologic Therapies for Irritable Bowel Syndrome With Constipation: A Mixed-Methods Analysis and Classification of Social Media and E-Forum Posts.

Background

Irritable bowel syndrome with constipation (IBS-C) is a common disorder of gut-brain interaction that significantly impairs quality of life. Although multiple US Food and Drug Administration (FDA)-approved medications have demonstrated efficacy in randomized controlled trials, less is known about patients' real-world experiences and factors influencing treatment decisions. Here, we conducted social media netnography-a qualitative approach for examining patient perspectives posted online on social media platforms and e-health forums, exploring the perspectives and experiences of IBS-C patients who report using FDA-approved therapies.

Methods

We examined publicly available posts from X and online health e-forums (Reddit, WebMD, ibspatient.org) made between 9/19/2007 and 9/12/2024. Overall, 7328 relevant posts referencing FDA-approved IBS-C medications (linaclotide, lubiprostone, plecanatide, tegaserod, tenapanor) were included. We employed qualitative (open coding) and quantitative approaches (natural language processing and artificial intelligence) to analyze the posts.

Results

Four major themes emerged: (i) perceived medication efficacy; (ii) treatment-related burden; (iii) intentional non-adherence; and (iv) barriers to adherence. Patients described heterogeneous efficacy, ranging from meaningful symptom relief to limited or no benefit. Patients discussed the biopsychosocial burden of IBS-C medications (e.g., nausea, frustration, social anxiety from potential diarrheal side effects), highlighting various barriers to adherence. Barriers such as cost, insurance coverage, and personal beliefs also influenced decisions, often prompting discontinuation, dose adjustments, or pursuit of alternative therapies.

Conclusions

Social media provides unique insights into IBS-C patients' real-world experiences with FDA-approved therapies. Findings highlight variability in efficacy, biopsychosocial impacts, and adherence challenges, underscoring the need for shared decision making and proactive management of barriers to optimize outcomes.