Use of Social Media Is Associated with a Decreased Quality of Life in Patients with Inflammatory Bowel Disease

Purpose: Social media (SM) use is increasingly becoming a source of information for IBD patients. Prior studies have shown internet recruited IBD patients have a decreased quality of life compared to clinic recruited patients. However, SM provides a unique mechanism of communication, and currently, there is limited data assessing its impact on IBD patients. We hypothesize that usage of social media improves quality of life (QOL) in IBD. Methods: A prospective, survey-based study was provided to IBD patients 18 years and older, seen in our IBD clinic. Age, gender, SM use, and education level were self-reported. SIBDQ, HBI, and disease type/duration/extent were obtained by chart review. For those affirming SM use, data was collected on mode of access, use of IBD specific groups, access frequency, posting frequency, effect on QOL, doctor awareness, use of SM information, and perceived reliability of this information. Results: Eighty-six patients (64% female) participated in the survey, with a mean age of 34 years. Disease distribution was: 76% CD, 22% UC, and 2% indeterminate. Most patients had college experience (74%), with 44% of those completing college. Most patients reported using SM sites (76%). Of the SM patients, 97% used Facebook, 25% used Twitter, and 25% used Linked-In. Twenty-three percent of patients used IBD-specific groups. The majority of all SM users reported using their mobile phone as their primary means of access. Compared to non-SM users, SM users were younger (p=0.000), diagnosed at a younger age (p=0.007), and had shorter disease duration (p=0.03). There was no difference in SIBDQ/HBI, gender, education level, or disease type. Of patients who used IBD-SM groups, 73% reported they had used advice, and 80% felt the information was reliable. Only 13% had made their doctor aware of their IBD group use. Forty-six percent of users accessed these groups once a week, and 54% posted once a month. A greater proportion of women reported using IBD-SM groups (p=0.05). There were no differences in age, disease duration/distribution, HBI scores, or education level. Fifty-three percent of IBD-SM users reported a subjective QOL improvement, but IBD-SM users had lower SIBDQ scores than non-IBD group SM users (p=0.017). Conclusion: IBD patients are routinely seeking out and using disease advice on social media that they view as reliable, often without input from their physician. Overall, patients using and not using IBD-specifi c social media have similar disease activity scores; however, patients using IBD-specific social media sites tend to have lower quality of life scores. Despite these lower scores, these patients feel social media use has a positive impact on their quality of life, suggesting their quality of life would be even worse without social media.