Abstract: FR-PO862
Disease Burden of IgA Nephropathy (IgAN): A Linguistic Analysis of Global Social Media Conversations over Time: A Comparison of Results, 2019-2023
Session Information
- IgA Nephropathy: Clinical, Outcomes, and Therapeutics
October 25, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
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
The treatment landscape for Immunoglobulin A Nephropathy (IgAN) has evolved with the approval of several new therapies for patients requiring a comparative evaluation of a prior and updated ethnographic study to understand changes in patient experiences of disease manifestations, disease impact, and treatment of IgAN as described by patients, caregivers, and healthcare providers (HCPs).
Methods
We compare results from two social listening studies using the same methodology to capture global, public, social media (i.e., X, Reddit, etc.) posts from Period 1: 5/1/2019 – 5/30/2021 and Period 2: 12/1/2022 – 12/31/2023, using technologies such as web crawlers and data partnerships. Sociolinguists analyzed the posts in the native language using qualitative and quantitative methods.
Results
Overall, total social media posts describing the disease experience of individual patients with IgAN from Period 1 to Period 2 increased (1,024 to 1,165) and was comprised of identifiable patients (902, 1,105), caregivers (102, 39), and HCPs (20, 21) respectively. Posts increased from Japan (+106), the United Kingdom (+40), South Korea (+32), Germany (+37), and Canada (+19) and decreased from the United States (-59) and France (-39). Posts about symptoms were similar (229 to 248); treatments increased (627 to 723) and impact decreased (400 to 233). Post characteristics over time are detailed in Table 1 below.
Conclusion
This comparative analysis of real-world social media posts assessed discussion trends of patients with IgAN to better understand their experiences. Social media conversations increased over time and their global distribution, patient characteristics, and content changed. This analysis demonstrates that patient experiences of IgAN are not static; regular updates to detect changes in patient experiences of disease manifestations, disease impact, and treatment of IgAN can help inform future research studies.
Table 1: Post Characteristics Over Time from Period 1 to Period 2
| Post Characteristic* | Period 1 (%) | Period 2 (%) | |
| Status | Seeking Diagnosis Newly Diagnosed In Treatment Kidney Failure | 16 23 32 29 | 8 12 77 3 |
| Symptoms | Hematuria Proteinuria Fatigue Pain High Blood Pressure | 34 42 12 5 16 | 35 33 8 12 7 |
| Impact | Emotional Physical Treatment Burden Caregiver/Relationship | 30 17 24 17 | 57 22 3 2 |
*Single post could mention more than one characteristic
Funding
- Commercial Support – Otsuka Pharmaceutical Development and Commercialization, Inc.