JMIR Publications

ABSTRACT

Background:

The increased use of social media platforms has allowed for greater discussion and dissemination of medical information to the public. Pemphigus is a rare spectrum of autoimmune-mediated blistering diseases associated with diagnostic delays, indicating a greater need for awareness of symptoms.

Objective:

To assess the frequency and the way in which pemphigus is discussed on social media and to characterize the sources generating pemphigus-related content.

Methods:

To identify the social media footprint of pemphigus, the popular social media applications Instagram, Facebook, Twitter, and YouTube were searched in April 2023. The common search phrase #pemphigus was queried on Facebook, Twitter, Instagram, and YouTube. Information regarding support groups was ascertained on Facebook groups. Information regarding the sender, level of engagement, and type of content (educational, promotional, personal, or recruitment) was analyzed.

Results:

Most of the YouTube content analyzed (60%) was created by physicians and 100% of content was educational. Instagram had a high proportion of non-human pemphigus content (49%), and organizations were the most common publishers (76%). Physicians contributed 50% of Twitter pemphigus content with the highest engagement, while patients created very few tweets (6%), non-human pemphigus made up 12% of total Twitter content. The majority of Facebook support groups was for pemphigus vulgaris (80%) and most Facebook pemphigus posts were for general awareness.

Conclusions:

Current use of social media for pemphigus revolves around educational content and establishing support systems. There is a need for more human-centered pemphigus content by patients and trusted healthcare professionals, as well as support groups for other types of pemphigus besides pemphigus vulgaris.