This article is more than 5 years old. Information may no longer be current.
IBD patients on social media focus on risks rather than benefits of biologics
Click Here to Manage Email Alerts
A study of social media posts showed patients with inflammatory bowel disease more often share their concerns about the negative side effects of biologics rather than their benefits or costs, leading investigators to conclude that physicians should do more to help patients understand their treatment options.
“Physicians need to do a better job explaining the risks and benefits of medications,” Christopher V. Almario, MD, of the Cedars-Sinai Center for Outcomes Research and Education in Los Angeles, said in a press release. “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.”
Christopher V. Almario
Almario and colleagues analyzed a random sample of more than 15,000 IBD-related online posts, from which they identified 452 that focused on the risks or benefits of biologic therapies. They observed five main themes: 54.6% of posts focused on negative experiences and concerns with biologics, 37.4% on decision-making regarding the use of biologics, 37.2% on positive experiences with biologics, 27.7% on seeking information and support from peers, and 8.4% on costs.
Posts about negative experiences with biologics mostly focused on side effects patients had experienced — including fatigue, rash/skin issues, infections, hair loss and headaches — as well as patient concerns about possible side effects, cancer risk, safety during pregnancy and weakened immune system.
Posts about treatment decision-making focused on nonbiologic therapies, and patients’ hesitation to start, change or stop biologic therapies.
“We also found that even after individuals received medical advice from their health care providers, many still turned to social media with questions and to validate their experiences,” Almario and colleagues wrote.
Further, a small number of posts focused on patients’ concerns about being unable to pay for biologics, and the researchers found that even insured individuals reported having issues obtaining coverage for biologics or covering copayments.
The investigators concluded that developing online tailored decision tools may be an effective strategy to help guide IBD patients through the treatment decision-making process.
“Social media clearly is telling us that patients have difficulty navigating the pros and cons of these medications,” Almario said in the press release. “We physicians need to step up and help our patients accurately assess their treatment options.” – by Adam Leitenberger
Disclosures: This study was supported by Takeda Pharmaceuticals, and two study investigators are employees of Takeda.
Read more about
Click Here to Manage Email Alerts