(Boston) - It’s not news gastroenterologists want to hear. In one of the first analyses of its kind on inflammatory bowel disease (IBD), researchers at Boston Medical Center and Boston University found that the general public is neither very aware, nor very knowledgeable of IBD, but does harbor a high stigma for the disease. To make matters worse, individuals who are the most active on social media – through creating and consuming content – were found to have the least knowledge of IBD.

IBD is a chronic gastrointestinal condition, of which Crohn’s disease and ulcerative colitis are categorized under, that affects more than 5 million people globally and 1.6 million in the United States, but it currently lacks a precisely determined cause or cure. The range of symptoms, including diarrhea, abdominal pain and cramping, and unintended weight loss, are often debilitating, and the societal stigmas associated with some of the symptoms can further degrade IBD patients’ quality of life.

“Our survey is concerning because it shows people with the least knowledge of IBD are the most active on social media, which suggests that much of the content created by the general public pertaining to IBD on social media could be incorrect or inaccurate,” said Jason Reich, MD, of Boston Medical Center (BMC) and senior author of the study. “They may be contributing to a dangerous misinformation cycle regarding IBD online.”

Using an online opt-in platform, BMC and Boston University College of Communications researchers surveyed 1,200 people in the U.S. in a nationally representative sample with demographics mirroring those of the U.S. Census figures. IBD was found to be the most stigmatized of seven diseases when compared to genital herpes, alcoholism, breast or testicular cancer, diabetes, obesity, and HIV/AIDS. Knowledge of IBD is also generally low, with 11.1 percent of those surveyed indicating no familiarity with the disease. The IBD survey asked 12 true or false questions, and 85.5 percent of participants answered two-thirds of them incorrectly. Survey respondents who were the most engaged in social media were found to have lower levels of IBD knowledge.

A 2015 Pew report found that social media platforms, namely Facebook and Twitter, now represent principal media sources for many individuals across age cohorts in the United States. The findings do not suggest misinformation about IBD is rampant, but Reich and his team suggest that greater efforts to increase IBD knowledge and reduce stigma must be taken across all media, but especially across social media channels.

“The survey did find that increased knowledge of IBD is associated with lower levels of stigma, and by shedding light on the underlying relationships between media participation, knowledge, and stigma, the IBD community will be more informed on the need and how to combat IBD misinformation and stigma,” said Reich.

The study was published in the Journal of Medical Internet Research.


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