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Abstract: FR-PO863

Disease Burden of IgA Nephropathy: An Updated Linguistic Analysis of Global Social Media Conversations

Session Information

Category: Glomerular Diseases

  • 1402 Glomerular Diseases: Clinical, Outcomes, and Therapeutics

Authors

  • Oberdhan, Dorothee, Otsuka Pharmaceutical Development and Commercialization Inc, Princeton, New Jersey, United States
  • Ali, Sarah Naz, Otsuka Pharmaceutical Development and Commercialization Inc, Princeton, New Jersey, United States
  • Morea, Erin, Real Chemistry International LLC, New York, New York, United States
  • Batra, Akansha, Real Chemistry International LLC, New York, New York, United States
  • Dandy, Jennifer, Real Chemistry International LLC, New York, New York, United States
Background

New therapies have been approved to treat Immunoglobulin A Nephropathy (IgAN) and a refresh of a prior ethnographic study is needed to understand patient experiences of disease manifestations, disease impact and treatment of IgAN as described by patients, caregivers and healthcare providers (HCPs).

Methods

A social listening methodology captured public social media (e.g., X, Reddit) posts from 12/1/2022-12/31/2023 globally, using technologies such as web crawlers and data partnerships. Sociolinguists analyzed the posts in the native language using qualitative and quantitative methods.

Results

A total of 1,165 posts described the experience of individuals with IgAN from 1,105 identifiable patients, 39 caregivers and 21 HCPs. Countries with the most posts were Japan (66%), the United States (13%), the United Kingdom (7%) and South Korea (4%). In the analysis, a single post could report multiple patient experience characteristics. Disease manifestations were reported in 248 posts (21%); the top described were hematuria (35%), proteinuria (33%) and pain (12%). Treatments were reported in 723 posts (62%); the top described were steroids (62%) and lifestyle management (16%). Impact of disease was reported in 233 posts (20%). Top impacts described were Emotional (e.g., disease progression anxiety, depressive thoughts about their disease and fear about their chronic illness with “no cure”) (57%), Physical (e.g., “extreme” fatigue/pain and impact on mobility/sleep) (22%) and Work/School (e.g., ability to function, stigma/pressures to contribute with a chronic illness, concern of symptoms/diagnosis and impact on military status (7%). Approved IgAN therapies were only mentioned in US posts (12%).

Conclusion

This updated analysis of real-world social media posts assessed discussion trends of patient experiences with IgAN and suggested that IgAN’s effect on patients may arise more from disease manifestations and treatments. Although patients described heightened anxiety over their kidney function levels, and patients and caregivers highlighted the desire for advanced treatments that protect kidney function, surprisingly, newly approved therapies for IgAN were rarely mentioned. With the advent of newer therapies, this update demonstrates the importance of capturing IgAN patient experiences to inform research.

Funding

  • Commercial Support – Otsuka Pharmaceutical Development and Commercialization, Inc.