DAY 1 - Online Forum for Individuals with Ulcerative Colitis Reveals Shortcomings of Health Insurance Structure

People living with ulcerative colitis (UC) face a myriad of issues related to disease management and health insurance utilization. Among those, overcoming obstacles to treatment approval and the psychological burden of managing a chronic illness emerged as the most prominent concerns across thousands of Reddit discussions, according to findings presented in a poster session at the ACG 2024 Annual Scientific Meeting in Philadelphia, Pennsylvania.

“Ulcerative colitis is a chronic immune-mediated inflammatory condition of the large intestine often requiring recurring laboratory and procedural testing, frequent office visits, costly oral or infusion medications and sometimes hospitalization or surgery, making health insurance vital,” said lead author Saeed Graham, MD, an internal medicine resident at East Carolina University, in Greenville, North Carolina. “However, insurance-related healthcare utilization matters, including medication denials, prior authorizations, and step-up therapy requirements have become expected frustrations for providers and patients with ulcerative colitis.”

Because UC has a significant impact on quality of life, individuals living with this condition often use social networks and forums to discuss disease management, share news, and seek support. The subreddit r/UlcerativeColitis provides a niche forum for people diagnosed with UC across the globe as well as family members and other people caring for patients with UC. In the study conducted at East Carolina University, Graham and colleagues analyzed submissions from the r/UlcerativeColitis subreddit archived from 2012 through the end of 2022. Natural language processing methods were used to identify critical topics and patient perspectives about health insurance discussed online. The study revealed five overarching themes across nearly 1,200 subreddit discussions about health insurance that were included in the final analysis. Those were related to symptoms and daily challenges, diagnosis and management of UC, biologic and synthetic small molecule treatments, challenges of maintaining income, psychological burdens, and coordination of care. Sentiment analysis was then conducted to determine the polarity and subjectivity scores of the submissions.

“Analysis of individual submissions revealed ambivalence, with users acknowledging both positive aspects of insurance, such as coverage, and frustrations, such as cost or access issues,” Graham explained. “Addressing these systemic issues within our current health insurance infrastructure may improve patient outcomes and overall quality of life for individuals with ulcerative colitis.” 
Overall, the findings point to a need for improved insurance policies and support systems that may enhance patient care and reduce financial and emotional stress for people living with UC, the authors concluded.