April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: A Patient Perspective of Granulomatosis With Polyangiitis (Wegener’s)
Chronic diseases are directly linked to 74% of all deaths worldwide (World Health Organization, 2022). They tend to be of long duration and are a result of many different genetic, physiological, environmental, and behavioral factors. Granulomatosis with Polyangiitis (GPA) is such a disease. GPA is an autoimmune disorder defined as a necrotizing granulomatous inflammation of the upper and lower respiratory tracts, with necrotizing vasculitis of small and medium-sized vessels such as the capillaries, veins, arterioles, and arteries (Comarmond & Cacoub, 2014). While GPA is active, inflammation within the blood vessels and organs can cause organ failure without treatment, potentially through kidney or lung failure. It is rare, with a case rate of 3 in 100,000 and the exact cause is yet to be known (ACR, 2021).
With rare chronic diseases, there are many symptoms and medications that patients must manage that bring unique and difficult-to-answer questions. Online communities provide a valuable outlet, as they not only provide an appreciated space to strengthen social ties and exchange relevant information but also give voice to patients who may require other forms of peer support that their physicians may not be able to provide.
This paper analyzes the Wegeners Granulomatosis / GPA Support and Information online forum for frequent topics and support requests within the forum’s threads. Therefore, the following research question was posed: What are the most commonly discussed topics and support requests within the GPA online forum? To address the research question, a latent content analysis procedure was applied to random threads selected within the GPA online forum. Two coders independently analyzed the same 100 threads to create an inductive coding framework. The unit of analysis was the original post within the thread without its subsequent replies.
Threads collected ranged from 2008 to 2023, with a majority between 2010 and 2015. The coding process produced four thematic groupings and other topics that did not fall under an overarching category. The first grouping recognizes the user’s feelings toward GPA, the second outlines physical symptoms brought on by the illness or its medication, the third pertains to the patient’s current, previous, or future state of illness, and the fourth relates to the poster’s mention of medication or treatment.
The most frequent topics of discussion pertain to a patient’s physical symptoms and their medication or treatment. Explicit support requests came in the form of requesting information. Many individuals sought information pertaining to their current medication, clinicians, or treatment. With the prevalence of online support forums for common illnesses, the GPA online forum aligns with similar research on online forum support in its utility for learning more about the illness (Ziebland & Wyke, 2012; Kirk & Milnes, 2016; White & Dorman, 2001). Frequently asked questions such as the course of the illness, how the body reacts to medication, and symptoms that may arise, are common. Future research should examine the dialogue between usersto develop a deeper understanding of how information is spread, and how peer support is provided.
With rare chronic diseases, there are many symptoms and medications that patients must manage that bring unique and difficult-to-answer questions. Online communities provide a valuable outlet, as they not only provide an appreciated space to strengthen social ties and exchange relevant information but also give voice to patients who may require other forms of peer support that their physicians may not be able to provide.
This paper analyzes the Wegeners Granulomatosis / GPA Support and Information online forum for frequent topics and support requests within the forum’s threads. Therefore, the following research question was posed: What are the most commonly discussed topics and support requests within the GPA online forum? To address the research question, a latent content analysis procedure was applied to random threads selected within the GPA online forum. Two coders independently analyzed the same 100 threads to create an inductive coding framework. The unit of analysis was the original post within the thread without its subsequent replies.
Threads collected ranged from 2008 to 2023, with a majority between 2010 and 2015. The coding process produced four thematic groupings and other topics that did not fall under an overarching category. The first grouping recognizes the user’s feelings toward GPA, the second outlines physical symptoms brought on by the illness or its medication, the third pertains to the patient’s current, previous, or future state of illness, and the fourth relates to the poster’s mention of medication or treatment.
The most frequent topics of discussion pertain to a patient’s physical symptoms and their medication or treatment. Explicit support requests came in the form of requesting information. Many individuals sought information pertaining to their current medication, clinicians, or treatment. With the prevalence of online support forums for common illnesses, the GPA online forum aligns with similar research on online forum support in its utility for learning more about the illness (Ziebland & Wyke, 2012; Kirk & Milnes, 2016; White & Dorman, 2001). Frequently asked questions such as the course of the illness, how the body reacts to medication, and symptoms that may arise, are common. Future research should examine the dialogue between usersto develop a deeper understanding of how information is spread, and how peer support is provided.