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 In General Medicine

Cedars-Sinai researchers analysed thousands of social media posts to determine the biggest concerns patients with inflammatory bowel disease (IBD) have about their prescribed treatments.

The number one patient concern has been identified as risks of side-effects from biologic medications even when risks are remote.

Although there are several available IBD treatment options, biologic medications are a mainstay treatment for those with moderate-to-severe forms of the disease.

‘Physicians need to do a better job explaining the risks and benefits of medications,’ explained 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.’

Almario, along with Bibiana Martinez, MPH, Francis Dailey, MD, and Brennan Spiegel, MD, analysed more than 15,000 posts on social media and health-related websites between June 2012 and June 2015.

Their study, published in Inflammatory Bowel Diseases, the official journal of the Crohn’s and Colitis Foundation, shows patients are much more concerned with the possible side effects than they are with cost of the drugs.

The study shows that:

  • 54 per cent of posts discussed negative side-effects, whether these individuals experienced the side effect or were merely fearful
  • 27 per cent of posts were from patients asking for advice even though these patients had recently spoken with their physicians
  • Only eight per cent were interested in discussing the cost of their medication

‘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.’

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