Abstract: SA-PO0119
Filtering Facts from Fiction: PKD Health Advice on TikTok
Session Information
- ADPKD and Cystic Kidney Disease - 3
October 24, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Cystic (Monogenic)
Authors
- Peck, Elizabeth G., Rutgers New Jersey Medical School, Newark, New Jersey, United States
- Suresh, Dhakshayini, Rutgers New Jersey Medical School, Newark, New Jersey, United States
- Zaki, Adam, Rutgers New Jersey Medical School, Newark, New Jersey, United States
- Kavia, Jay, Rutgers New Jersey Medical School, Newark, New Jersey, United States
- Mittal, Rahul, Rutgers New Jersey Medical School, Newark, New Jersey, United States
Background
Polycystic kidney disease (PKD) is a hereditary disorder characterized by progressive renal cyst formation, hypertension, and kidney function decline. With no curative treatment available, TikTok has emerged as a major source of PKD-related health information. However, the accuracy and reliability of this content remains poorly studied. This study analyzes TikTok videos on PKD to asses, dominant themes, differences between medical and non-medical creators, and if content is evidence-based.
Methods
The top 50 videos each for #PKD and #polycystickidneydisease were collected via Apify, yielding 100 unique videos. After excluding non-English content, 83 videos remained. Three independent reviewers categorized videos by author type (medical vs. non-medical) and video type (informational, personal, or funny). Informational videos were assessed using DISCERN, PEMAT (understandability and actionability), and the Global Quality Scale (GQS). Fisher's exact test and unpaired t-tests were used for statistical analysis.
Results
Of 83 videos, 33 were informational, 44 personal, and 6 funny. Medical professionals produced 22 videos; non-medical creators produced 61. Informational videos averaged a DISCERN score of 45.09 (±10.76) and PEMAT scores of 70.63% for understandability and 58.38% for actionability. On average, informational videos received significantly more views (64,115 vs. 6,816; p=0.0184), interactions (2,436 vs. 452; p=0.0329), and higher GQS scores (3.31 vs. 2.73; p=0.0113) than personal videos. Medical professionals also produced higher-quality content (GQS 3.36 vs. 2.70; p=0.0109), more views (84,121 vs. 9,927; p=0.0031), and greater engagement (3,353 vs. 461; p=0.0025).
Conclusion
Informational videos received higher engagement and quality scores, yet non-informational content remained more prevalent within the PKD TikTok landscape. The engagement advantage likely reflects heightened patient demand for guidance in a disease with no cure. Additionally, medical professionals produced higher-quality, higher-reach content, yet non-medical creators dominated, leaving space for misinformation to fill, including AI-generated videos mimicking medical doctors. These findings make a clear case for greater physician engagement on TikTok to deliver actionable guidance on dietary modification, blood pressure control, exercise, and medication use, while citing sources to help patients distinguish evidence-based content from misinformation.