OBJECTIVES: Colorectal cancer (CRC) is the third leading cause of cancer death worldwide. This study analyzed social media trends around CRC to understand patients’ and caregivers’ perceptions relating to the overall impact of the disease.

METHODS: Two CRC forums were identified manually based on the following criteria: >500 posts in the English language. All threads posted between 2021–2022 were reviewed and analyzed. Artificial intelligence technologies were used for supervised and unsupervised analyses of prominent discussion topics and sentiment analysis.

RESULTS: Overall, 231,567 CRC-related posts were retrieved for review and analysis. Patients or caregivers wrote 15,150 primary posts and 216,417 responses to the primary posts. In total, 6% of posts reported gender, with a 70%/30% of male/female gender distribution. We identified the following seven topics discussed in the posts: just diagnosed with CRC (~18%), living with CRC (~26%), moving on from CRC (5%), stage 4 CRC (~29%), treatment and its side effects (~20%), young people with CRC (~1.5%) and research involvement (~0.5%). Within the posts discussing treatments, perceptions of patients on surgery (~16%), chemotherapy (~20%), radiotherapy (~0.3%), and targeted therapies (~0.002%) were investigated. Using machine learning, we conducted patients’ and caregivers’ sentiment analyses on each topic. Each post was classified into positive, negative, or neutral sentiments to understand patient perceptions.

CONCLUSIONS: Social media platforms are important in understanding patient and caregiver perception of CRC and can help healthcare professionals better understand their concerns. The seven discussion topics identified in this study highlight the sentiments of patients and caregivers through their journey from cancer diagnosis to treatment and recovery.