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Patient Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights From a Large‐Scale Survey of Social Media Platforms
Author(s) -
Dzubur Eldin,
Khalil Carine,
Almario Christopher V.,
Noah Benjamin,
Minhas Deeba,
Ishimori Mariko,
Arnold Corey,
Park Yujin,
Kay Jonathan,
Weisman Michael H.,
Spiegel Brennan M. R.
Publication year - 2019
Publication title -
arthritis care and research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.032
H-Index - 163
eISSN - 2151-4658
pISSN - 2151-464X
DOI - 10.1002/acr.23600
Subject(s) - medicine , social media , thematic analysis , ankylosing spondylitis , scale (ratio) , perception , latent dirichlet allocation , qualitative research , topic model , family medicine , psychology , world wide web , social science , physics , quantum mechanics , neuroscience , sociology , computer science , natural language processing
Objective Few studies have examined ankylosing spondylitis ( AS ) patients’ concerns about and perceptions of biologic therapies, apart from traditional surveys. In this study, we used social media data to examine the knowledge, attitudes, and beliefs of AS patients regarding biologic therapies. Methods We collected posts published on 601 social media sites between January 1, 2016 and April 26, 2017. In each post, both an AS keyword and a biologic were mentioned. To explore themes within the collection of posts in an unsupervised manner, a latent Dirichlet allocation topic model was fit to the data set. Each discovered topic was represented as a discrete distribution over the words in the collection, similar to a word cloud. The topics were manually reviewed to identify themes, which were confirmed using thematic data analysis. Results We examined 27,416 social media posts and identified 112 themes. The majority of themes (n = 67 [60%]) focused on discussions related to AS treatment. Other themes, including the psychological impact of AS , reporting of medical literature, and AS disease consequences, accounted for the remaining 40% (n = 45). In discussions regarding AS treatment, most topics involved biologics, and most subthemes involved side effects (e.g., fatigue, allergic reactions), biologic treatment attributes (e.g., dosing, frequency), and concerns about use of biologics (e.g., increased cancer risk). Additional implicit patient needs (e.g., support) were identified using qualitative analyses. Conclusion Social media revealed a dynamic range of themes governing AS patients’ experience with and choice of biologic agents. The complexity of selecting biologics from among many such agents and navigating their risk/benefit profiles suggests the merit of creating online tools tailored to support patients’ decision‐making with regard to biologic therapies for AS .