Background: Few studies have examined inflammatory bowel disease (IBD) patients' knowledge and understanding of biologic therapies outside traditional surveys. Here, we used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affects decision-making.
Methods: We collected posts from Twitter and e-forum discussions from >3000 social media sites posted between June 27, 2012 and June 27, 2015. Guided by natural language processing, we identified posts with specific IBD keywords that discussed the risks and/or benefits of biologics. We then manually coded the resulting posts and performed qualitative analysis using ATLAS.ti software. A hierarchical coding structure was developed based on the keyword list and relevant themes were identified through manual coding.
Results: We examined 1598 IBD-related posts, of which 452 (28.3%) centered on the risks and/or benefits of biologics. There were 5 main themes: negative experiences and concerns with biologics (n = 247; 54.6%), decision-making surrounding biologic use (n = 169; 37.4%), positive experiences with biologics (n = 168; 37.2%), information seeking from peers (n = 125; 27.7%), and cost (n = 38; 8.4%). Posts describing negative experiences primarily commented on side effects from biologics, concerns about potential side effects and increased cancer risk, and pregnancy safety concerns. Posts on decision-making focused on nonbiologic treatment options, hesitation to initiate biologics, and concerns about changing or discontinuing regimens.
Conclusions: Social media reveals a wide range of themes governing patients' experience and choice with IBD biologics. The complexity of navigating their risk–benefit profiles suggests merit in creating online tailored decision tools to support IBD patients' decision-making with biologic therapies.
Article first published online 13 April 2017.
*Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Los Angeles, California;
†Department of Medicine, Cedars-Sinai Medical Center, Los Angeles, California;
‡Department of Medicine, Division of Digestive and Liver Diseases, Cedars-Sinai Medical Center, Los Angeles, California;
§Department of Medicine, Division of Health Services Research, Cedars-Sinai Medical Center, Los Angeles, California; and
‖Takeda Pharmaceuticals U.S.A., Inc., Deerfield, Illinois.
Reprints: Brennan M.R. Spiegel, MD, MSHS, Cedars-Sinai Health System Pacific Theatres Building, 116 North Robertson Boulevard, 4th Floor, Los Angeles, CA 90048 (e-mail: Brennan.Spiegel@cshs.org).
Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's Web site (www.ibdjournal.org).
Supported by Takeda Pharmaceuticals, U.S.A., Inc.
Presented at Digestive Disease Week; May 21–24, 2016; San Diego, CA.
K. Lasch and L. Ursos are employees of Takeda Pharmaceuticals U.S.A., Inc. The remaining authors have no conflicts of interest to disclose.
B. Martinez and F. Dailey share first co-authorship.
Received December 19, 2016
Accepted February 23, 2017