Social media data has allowed scientists to examine ankylosing spondylitis patients’ knowledge, attitudes, and beliefs regarding biologic therapies.
The study, “Patients’ Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights from a Large-Scale Survey of Social Media Platforms,” was published in the journal Arthritis Care & Research.
Patients with ankylosing spondylitis (AS) often fail to respond to conventional therapies, such as non-steroidal anti-inflammatory drugs (NSAIDs) and corticosteroids.
Biological therapies (also known as biologics) are therapies that target individual molecules and tend to work faster than conventional disease-modifying anti-rheumatic drugs (DMARDs).
Some biological therapies are called anti-TNF drugs. They target a protein called tumor necrosis factor (TNF), which increases inflammation when excess amounts are present in the blood or joints. Other biological therapies target different proteins.
However, biologics come with a spectrum of potential side effects — including serious infections, cancer, and allergic reactions. This complicated risk-benefit profile has made it difficult for patients to pick which would be most beneficial. As a result, 40 to 60 percent of AS patients have never used biologics.
Cedars-Sinai Medical Center researchers used a new method called social netnography, which refers to the study of people and cultures by analyzing individuals’ free behavior on the internet.
Specifically, researchers used data from social media sites such as Spondylitis.org, Facebook, and Twitter to examine the knowledge, attitudes, and beliefs of ankylosing spondylitis patients regarding biologic therapies.
Researchers collected posts that mentioned both an ankylosing spondylitis keyword and a biologic keyword from 601 social media sites from Jan. 1, 2006, to April 26, 2017.
From there, 27,416 social media posts that fit into 112 different themes were analyzed. Sixty percent of the themes were focused on discussions surrounding AS treatment — 54 percent of which were specifically focused on discussing biologics.
The subthemes within the biologics category included side effects such as fatigue and allergic reactions, biologic attributes such as dosing and frequency, and concerns with biologic use such as increased cancer risk.
The remaining 40 percent focused on the psychological impact of ankylosing spondylitis, reports published in medical literature, and disease consequences.
Many discussions expressed a lack of trust in physicians’ treatment recommendations, causing some patients to turn to their online peers with questions, and to seek validation.
Because the quality of information available online is unreliable, the authors suggest that informed stakeholders, such as physicians and patient advocacy groups, should increase their online presence on social media to help provide accurate information.
“Social media reveals a dynamic range of themes governing [ankylosing spondylitis] patients’ experience and choice with biologics,” the researchers wrote.
The difficulty in choosing among biologics and navigating the risk-benefit profiles suggests that there is value in “creating online tailored decision-tools to support patients’ decision-making with [ankylosing spondylitis] biologic therapies,” they added.
The authors disclosed the study was supported by Novartis.
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