Few studies have examined inflammatory bowel disease (IBD) patients' knowledge and understanding of biologic therapies outside traditional surveys.
Dr Brennan Spiegel and colleagues used social media data to examine IBD patients' understanding of the risks and benefits associated with biologic therapies and how this affects decision-making.
The researchers collected posts from Twitter and e-forum discussions from more than 3000 social media sites posted between 2012 and 2015.
Guided by natural language processing, the researchers identified posts with specific IBD keywords that discussed the risks and/or benefits of biologics.
The team then manually coded the resulting posts and performed qualitative analysis using ATLAS.ti software.
|There were 5 main themes, including negative experiences |
|Inflammatory Bowel Diseases|
A hierarchical coding structure was developed based on the keyword list and relevant themes were identified through manual coding.
The research team examined 1598 IBD-related posts, of which 28% centered on the risks and/or benefits of biologics.
There were 5 main themes, including negative experiences and concerns with biologics, decision-making surrounding biologic use, positive experiences with biologics, information seeking from peers, and cost.
Posts describing negative experiences primarily commented on side effects from biologics, concerns about potential side effects and increased cancer risk, and pregnancy safety concerns.
The team reported that posts on decision-making focused on nonbiologic treatment options, hesitation to initiate biologics, and concerns about changing or discontinuing regimens.
Dr Spiegel's team concludes, "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."