TikTok and axSpA: How Accurate Is the Information?

Findings from new research presented at ACR Convergence 2025

Social media is a powerful tool for raising awareness and connecting people living with axSpA. But how reliable is the information we see online?

A new study presented at the American College of Rheumatology (ACR) Convergence 2025, titled “Quality and Accuracy of TikTok Videos on Axial Spondyloarthritis: A Modified DISCERN Analysis” (by Mahiar Rabie & Susan Harwell), explored just that — assessing the accuracy and quality of TikTok videos about axSpA.

What the Study Found

Researchers reviewed 66 TikTok videos on axSpA that each had at least 100 likes and contained educational or patient-focused content. Each was rated using a modified DISCERNtool — a standard measure of information quality — and judged for medical accuracy.

Only 18% were accurate
56% were partially accurate or misleading
26% were inaccurate

Most videos (77%) were posted by patients, while only 9% came from physicians. Videos made by doctors scored far higher for quality and accuracy than those by patients or influencers.

“Physician-created videos scored nearly twice as highly on reliability compared to patient-generated content.”
— Rabie & Harwell, 2025

Why It Matters for Our Community

The findings highlight a challenge — and an opportunity — for the global axSpA community:

Patients need trustworthy information. With 4 out of 5 TikTok videos at least partly inaccurate, misinformation can easily spread.
Uploader type matters. Who posts the video strongly influences its accuracy.
Patient organisations can fill the gap. By creating or sharing reliable, evidence-based content, we can help to ensure that patients find trustworthy information first.

What it means

This study reinforces the need for collaboration between patient organisations, clinicians, and digital communicators. Accurate, engaging video content — developed with medical oversight — can help counter misinformation and empower patients.

When creating content, often short, evidence-based videos work best. It’s important to partner with clinicians to ensure the messaging is accurate and always check sources before reposting content.

Quick Tips: Before You Trust a Health Video Online

Ask yourself:

Does it say who made it (and their qualifications)?
Are credible sources or references provided?
Is the information balanced (pros and cons)?
Does it explain what’s uncertain or unknown?
Does it encourage you to talk to your doctor?

If the answer is “no” to most of these — scroll past!

Read Abstract