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A Survey of Social Media Use and Preferences in Patients with Inflammatory Bowel Disease

Reich, Jason MD; Guo, Ling MD; Hall, Julia (MPH); Tran, Ashley MD; Weinberg, Janice ScD; Groshek, Jacob PhD; Rowell, Tanya E. RN, NP; DiPalma, Jack A. MD; Farraye, Francis A. MD, MSc

doi: 10.1097/MIB.0000000000000951
Original Clinical Articles

Background: With the recent increase in the use of social media, patients with chronic illnesses are using the Internet as a resource for disease management. As the peak incidence of inflammatory bowel disease (IBD) occurs in patients between the ages of 15 and 30, IBD is a suitable condition to study social media use. The aim of this study was to assess social media usage and preferences in patients with IBD.

Methods: We administered a survey to 118 patients with IBD at our outpatient practice at the Boston Medical Center (BMC), Center for Digestive Disorders, and the University of Southern Alabama (USA) between November 1, 2015, and March 9, 2016.

Results: The most frequently used IBD-specific social media website was the CCFA (86%). High-frequency social media users were more likely to agree that “social media is useful for managing my IBD,” compared with low-frequency social media users (OR 3.23, 0.3–10.1, P = 0.199). Fifty-five percent of respondents were interested in obtaining patient-with-IBD education through social media, or organizations such as the CCFA, whereas 45% did not express interest. Sixty-two percent of patients would be interested in following a social media account established by their gastroenterologist. Privacy and/or confidentiality issues were the primary barriers to social media use. Last, most patients were unsure of the quality of IBD information posted online.

Conclusions: The results of this study suggest that patients who frequently use social media are highly interested in using social media in the management of their IBD. Most patients with IBD in our study were interested in receiving IBD information from their gastroenterologist and other patient-related organizations through social media. Most patients are unsure of the quality of IBD information posted on social media. Gastroenterologists should be aware that their patients may use social media to obtain disease education. Future studies should assess the quality of IBD information on social media and the effectiveness of communication through social media as a means to improve patient education and outcomes.

Article first published online 12 October 2016.

*Section of Gastroenterology, Boston Medical Center, Boston, Massachusetts;

Department of Internal Medicine, Boston Medical Center, Boston, Massachusetts;

Department of Biostatistics, Boston University School of Public Health, Boston, Massachusetts;

§Division of Emerging Media, Boston University School of Communications, Boston, Massachusetts; and

Digestive Health Center, University of South Alabama College of Medicine, Mobile, Alabama.

Address correspondence to: Jason Reich, MD, Section of Gastroenterology, Boston Medical Center, Boston, MA 02118 (e-mail:

Supported by Andrew and Robin Davis and Susan Nicol.

The authors have no relevant conflict of interest to disclose.

Received August 13, 2016

Accepted August 29, 2016

© Crohn's & Colitis Foundation of America, Inc.
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