Inflammatory bowel disease (IBD) is a chronic gastrointestinal condition affecting over 5 million people globally and 1.6 million in the United States but currently lacks a precisely determined cause or cure. The range of symptoms IBD patients experience are often debilitating, and the societal stigmas associated with some such symptoms can further degrade their quality of life. Better understanding the nature of this public reproach then is a critical component for improving awareness campaigns and, ultimately, the experiences of IBD patients.
The objective of this study was to explore and assess the public’s awareness and knowledge of IBD, as well as what relationship, if any, exists between the social stigma surrounding IBD, knowledge of the disease, and various media usage, including social media.
Utilizing a Web-based opt-in platform, we surveyed a nationally representative sample (n=1200) with demographics mirroring those of the US Census figures across baseline parameters. Using constructed indices based on factor analysis, we were able to build reliable measures of personal characteristics, media behaviors, and perceptions and knowledge of IBD.
Among the American public, IBD is the most stigmatized of seven diseases, including genital herpes and human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS). Additionally, IBD knowledge is generally low with 11.08% (133/1200) of the sample indicating no familiarity with the disease and 85.50% (1026/1200) of participants inaccurately answering two-thirds of the IBD index questions with which their knowledge was assessed. Increased knowledge of IBD is associated with lower levels of stigma. However, social media use is currently related to lower levels of IBD knowledge ( P<.05). Furthermore, findings indicate that participants who most frequently engaged in producing social media content are less knowledgeable about IBD ( P<.10), highlighting the potential for a dangerous cycle should they be contributing to a Web-based IBD dialogue.
Greater efforts must be taken to stymie IBD misinformation across all media, but especially in social media channels, to increase IBD knowledge and reduce stigma surrounding IBD. These findings pave the way for further research qualitatively examining the pervasiveness of specific IBD messages found in today’s social media landscape and their impact on enacted stigmas so as to better equip providers and patient advocacy organizations with impactful communication solutions.