Top 5 concerns inflammatory bowel disease patients post on social media

Researchers from Cedars-Sinai have been able to extract primary concerns patients with inflammatory bowel disease (IBD) have about their biologic medications through social media posts. Findings were published in Inflammatory Bowel Diseases, the official journal of the Crohn's and Colitis Foundation.

Surveys have been conducted on IBD patients' knowledge of biologic therapies, but this is a first involving social media. This study used data from social media to evaluate understanding of risks and benefits of medications and how that knowledge affects decision-making.

Biologics, antibodies that block certain immune system signals from causing inflammation, are the main therapy for patients with moderate-to-sever IBD and are often costly and associated with serious infections and joint pain. Evaluating just fewer than 3,000 Twitter and e-forum posts between June 2012 and June 2015, researchers used natural language processing to identify IBM specific posts.

"Physicians need to do a better job explaining the risks and benefits of medications," said Christopher Almario, MD, one of the investigators on the study. "When people hear 'risk of lymphoma,' that's all they focus on even though the risk is very, very low, while the chance of getting better from the medication is quite high."

Of the 1,598 IBM-related posts, 452 specifically mention the risks and/or benefits of biologics. Results showed the posts focused on the following:

1. 54.6 percent mentioned the negative experience and concerns with biologics.
2. 37.4 percent mentioned decision making surrounding biologic use.
3. 37.2 percent mention a positive experience using biologics.
4. 27.7 percent mentioned asking for information from peers.
5. 8.4 percent mentioned costs.

Overall, patients were more concerned with the possible side effect of using biologics than the cost of the drugs.

"Social media clearly is telling us that patients have difficulty navigating the pros and cons of these medications," Almario said. "We physicians need to step up and help our patients accurately assess their treatment options."