Misinformation about mast cell activation syndrome (MCAS), which can occur with systemic mastocytosis (SM), is widespread in TikTok videos, according to a recent study published in the Journal of Allergy and Clinical Immunology.
Researchers analyzed the most-watched MCAS content on the platform and found that most videos lacked key diagnostic criteria and had a low overall quality score. The authors emphasized the need for patients and health care providers to be cautious when using social media as a source of medical information.
“Most MCAS videos on TikTok contained misinformation, did not include key diagnostic criteria, and had poor GQS [global quality score],” the study’s authors said. They continued, “Patients and health-care providers need to be aware of the quality of healthcare information on social media.”
This study reviewed the top 50 TikTok videos related to MCAS, which had a combined total of more than 6.5 million views. Each video averaged 131,500 views. Researchers evaluated the videos using a global quality score ranging from 1 to 5, considering factors such as the creator’s profession, use of the MCAS Vienna diagnostic criteria, and associations with related conditions such as postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome. The results revealed that, despite health care professionals creating 58% of the videos, the average quality score was only 1.94.
Only one video included the MCAS Vienna diagnostic criteria, an essential for accurate diagnosis. In addition, 12 videos (24%) mentioned a link between MCAS, POTS and Ehlers-Danlos syndrome. Misinformation trends included inaccuracies about symptoms, diagnostic methods, triggers and treatment options. These misleading videos could contribute to confusion among patients seeking reliable information about their condition.
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The presence of health care professionals in the majority of videos did not necessarily improve content accuracy. While physicians created 26% of the videos and other healthcare professionals were responsible for 32%, many posts still lacked essential diagnostic criteria and contained incorrect details. This suggests that even medical professionals on social media may not always provide comprehensive or accurate information.
With one in five Americans turning to TikTok before consulting a doctor, this study highlights the risks of relying on social media for medical advice. The researchers stressed the importance of ensuring that patients receive information from trusted sources, such as health care providers or reputable medical organizations, rather than from viral social media posts.
Given the widespread misinformation, patients with MCAS and related conditions should verify medical information with their health care teams. Raising awareness about the quality of online health content could help prevent the spread of misleading claims and improve patient education.
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