Introduction Illness blogs are online accounts of the course of a disease: they are unsolicited first person narratives, that are publicly accessible allowing author-reader interactivity. Expressive writing improves quality of life and scores in patients with irritable bowel syndrome. We sought to compare the accessibility and contents of illness blogs written by patients with ulcerative colitis (UC) and Crohn's disease (CD): hypothesising that psychological distress, reportedly more common in IBD than the general population, and active disease would be the key reasons for a post.
Methods Using the search terms “Crohn's* and Ulcerative colitis* with Blog” and the internet search engine Google, we identified 12 consecutive UC and Crohn's disease illness narratives. All posts written in the preceding year were included. We then undertook a structured quantitative analysis; including an assessment of the readability of posts using the Flesch reading ease (FRE) score and author-reader interactivity. Semi-qualitative analyses of excerpts of the contents of each post were undertaken using Dedoose software to identify narrative themes: wherever possible, for each post, disease activity was recorded.
Results 1297 and 1009 excerpts were made from 642 and 499 posts from the illness blogs written by patients with UC and CD, respectively. There were no differences in the mean [SD] number of posts in 1 year (UC: 68.6 [47.5] vs CD: 42.2 [29.6], p=0.12) or in the number of words per post (UC: 449  vs CD: 475 , p=0.76) between groups. Overall, there was no difference in the mean [SD] readability (FRES) scores (UC: 71 [7.0] vs CD: 67.9 [11.0], p=0.39): reportedly, easily understood by students aged between 13 and 14 years. No differences were seen in the median number of comments or links per post between groups. Overall, the majority of posts detailed personal experiences of IBD, with no differences between groups (UC: 51% [326/642] CD: 53% [264/499], p=0.51). Active disease was more frequently coded as a precipitant reason for making an entry in UC 25% [159/642] vs CD 17% [84/499], p=0.001. Patients with CD more frequently made entries in order to offer IBD related advice, including recent research advances, than patients with UC (UC: 4% [26/649] vs CD: 24% [118/499], p<0.0001): whereas patients with UC were more likely to use entries for non-IBD related social networking (UC: 24% 153/642 vs CD 14% [72/499], p<0.0001). In total, only 6 % (63/1141) of posts referred to psychological distress, with no differences between groups.
Conclusion The content of blogs differs according to disease type, but relatively few bloggers refer to psychological distress in their posts. Online platforms, such as a blogs, may however be a new way of providing patients with IBD psychological support.
Competing interests None declared.
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