Social media reveals a dynamic range of concerns and perceptions among patients with ankylosing spondylitis (AS) regarding the complex process of selecting a biologic agent, according to the results of a large-scale survey of social media platforms published in Arthritis Care & Research.
There have been few attempts to examine perceptions and concerns about the use of biologic medications among patients with AS outside of traditional surveys. The investigators of the current study sought to use social media data to explore knowledge, attitudes, and beliefs with respect to biologic therapies among patients with AS. Between January 1, 2006, and April 26, 2017, they collected posts from 601 social media sites. Each post mentioned both a keyword associated with AS and a biologic agent.
A total of 27,416 social media posts were examined, and the researchers identified 112 themes. Overall, 60% of the themes focused on discussions about the treatment of AS. Other topics, including the psychological effects of AS, AS disease consequences, and reporting in the medical literature, accounted for the remaining 40% of the themes. Within treatment discussions on AS, most of the topics (54%) involved biologic agents. Furthermore, a majority of the subthemes (78%) focused on side effects, including fatigue and allergic reactions; biologic attributes, including dosing and frequency; and concerns about the use of biologics, including increased risk for cancer.
The investigators concluded that social media platforms highlight a dynamic range of subjects that affect experiences and choice of biologic therapy among patients with AS. Given the complexity involved in selecting an appropriate biologic agent and navigating the risk-benefit profiles of each treatment, it may be valuable to create an online tailored decision tool that will help support patients in their choices. Further research and development of online decision-making tools that fit patients’ lifestyles and needs are warranted.
Dzubur E, Khalil C, Almario CV, et al. Patients’ concerns and perceptions regarding biologic therapies in ankylosing spondylitis: insights from a large-scale survey of social media platforms [published online May 21, 2018]. Arthritis Care Res (Hoboken). doi: 10.1002/acr.23600