Real-world experience with colorectal cancer chemotherapies: patient web forum analysis

BACKGROUND In contrast to clinical trials, patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums. METHODS This was a systematic cross-sectional qualitative analysis. Two active CRC web forums were identified based on four criteria: active for ≥five years, >12,000 total posts, >20 individuals currently browsing, and ≥10 new posts/day. All relevant threads (set of messages focusing on a topic) relating to treatment posted in July and December 2010 and February to March 2011 were reviewed and coded using MaxQDA software. A content analysis was performed identifying key themes. RESULTS The threads included 1522 posts by 264 individuals. Demographics were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean patient age was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common themes were side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, and emotional distress (23.9%). The posters came to the online forums to have an emotional outlet, share experience, and seek advice. The emotional impacts primarily exemplified resilience and positive coping strategies. Formal knowledge regarding the likelihood of treatment response, magnitude of benefit, or side effects was lacking, which lead to uncertainty and anxiety. However, patients expressed appreciation for the availability of treatment options and the hope they provide. CONCLUSION Online CRC communities provide patients with convenient and valuable emotional support and disease information. CRC and treatments may have profound impacts beyond efficacy and toxicity. Systematic information and decision tools may help to minimise uncertainties and help patients manage expectations and emotional distress.