Cedars-Sinai researchers analyze social media posts to identify patients' biggest IBD concerns — 4 insights

Los Angeles-based Cedars-Sinai researchers analyzed more than 1,598 social media posts to determine patients' biggest concerns with inflammatory bowel disease.

Study investigator Christopher Almario, MD, and colleagues collected the posts between June 2012 and June 2015. They identified specific IBD keywords that discussed biologics risks and benefits, while identifying keywords and relevant themes through coding.

Here's what you should know.

1. Approximately 452 people or 28.3 percent of posts were about biologics' risks or benefits.

2. Five themes emerged from the patients' posts:

  • Negative experiences and concerns — 247 people, 54.6 percent of posts
  • Decision-making surrounding biologics — 169 people, 37.4 percent of posts
  • Positive experiences with biologics — 168 people, 37.2 percent of posts
  • Information seeking from peers — 125 people, 27.7 percent of posts
  • Cost — 38 people, 8.4 percent of posts

3. Negatives posts commented on side effects, concerns about side effects, biologics' increased cancer risk and pregnancy safety concerns.

4. Posts on decision making focused on nonbiologic treatments, hesitation to initiate biologics and concerns about changing or discontinuing regimes.

Researchers concluded, "Social media reveals a wide range of themes governing patients' experience and choice with IBD biologics. The complexity of navigating their risk-benefit profiles suggests merit in creating online tailored decision tools to support IBD patients' decision-making with biologic therapies."

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