Background
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.
Objective
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.
Methods
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.
Results
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.
Conclusions
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.