Lack of trust in physicians, lack of information about biologics, medicine substitutions and the search for alternative therapies are among the reasons patients turn to the internet, a new study shows.
Biologic treatment for ankylosing spondylitis (AS) has become more common in recent years, but patients still struggle with identifying the best options for their personal treatment, a new study reported.
Consequently, research published recently in Arthritis Care & Research revealed patients are turning to online platforms for information not only about biologic function and efficacy, but also about risks and benefits. This is the first study to analyze large-scale social media data in an effort to examine patient concerns and perceptions around AS.
“The findings of this study can help researchers and clinicians anticipate the needs of patients with AS, as well as provide insight into thoughts and concerns some patients may have throughout the course of their treatment,” investigators wrote. “Moreover, these findings highlight the complexity that AS patients face when selecting among biologic treatments.”
Researchers collected online posts from 601 social media sites, including Facebook, Twitter, spondylitis.org, and KickAS.org, from Jan. 1, 2016 to April 26, 2017. From the 27,416 individual posts analyzed, 112 themes emerged. Most focused on AS treatment, including biologics and side effects, such as fatigue and allergic reactions, biologic treatment attributes, such as dosing and frequency, and concerns about biologic use, such as increased cancer risk.
Specifically, investigators pinpointed 61 percent of treatment-focused posts discussed pharmacologic treatment. Of posts centered on biologics, 78 percent centered on side effects related to use, biologic attributes, and risks.
In addition, the data analysis showed patients also turned to online forums to discuss their uncertainties and lack of information about biologics, lack of trust in their physician’s decisions, psychosocial challenges, worries, perceived effects, medicine substitutions, treatment determinants, and alternative therapies. Overall, they turned to social media to seek information and support or self-management advice.
Even though researchers and clinicians can use these findings to better anticipate patient needs, investigators said, further research is required into how social media and online decision-making tools can impact and support patients.
Dzubar E, Khalil C, Almario C, Noah B, Minhas D, Ishimori M, Arnold C, Park Y, Kay J, Weismann M, Siegel B. Patient Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights From a Large-Scale Survey of Social Media Platforms, Arthritis Care & Research (2019), doi: 10.1002/acr.23600.