Perceptions and responses to diseases among patients with inflammatory bowel disease: text-mining analysis of posts on a Japanese patient community website

Abstract

Introduction: Patients with inflammatory bowel disease (IBD) are increasingly using online platforms to communicate with other patients and healthcare professionals seeking disease-related information and support. Free-text posts on these platforms could provide insights into patients’ everyday lives, which could help to improve patient care. In this proof-of-concept study, we applied text-mining to extract patient needs from free-text posts on a community forum in Japan, and holistically visualized the patients’ perceptions and their connections, and explored the patient characteristic-dependent trends in the use of words. Methods: Free-text posts written between May 11, 2020 and May 31, 2022 on the community forum were retrieved and subjected to text-mining analysis. Trends in the use of words were extracted from the posts for correspondence and co-occurrence network analyses using KH Coder open-source text-mining software. Results: Seventy-four posts were analyzed. Using text mining methods, we successfully extracted and visualized a variety of patient concerns and their connections. The correspondence and co-occurrence analyses revealed patient segment-dependent trends in the use of words. For example, patients with a disease duration of ≤5 yrs were more likely to use words related to emotions or their desire to change or quit their job, such as ‘anxiety’ and ‘resignation.’ Patients with a disease duration of >10 yrs were more likely to use words showing that they are finding ways to live with or accept their disease, and are getting used to the lifestyle but some patients continued to experience worsening disease. Conclusions: We found that free texts posted on an IBD community forum can be a useful source of information to capture the wide variety of thoughts of patients. Text mining procedures can help to visualize the relative importance of the topics identified from free text posts. Our findings of this proof-of-concept study will be useful for generating new hypotheses to better understand and address the needs of patients with IBD.