Of the 10 identified eligible YouTube videos, 5 (50%) were made by physicians, 4 (40%) by various organizations, and 1 (10%) by patients (Table 1). All videos were educational, and the average length of the videos was 4 minutes and 42 seconds. The average number of views per video was 23,404, and the average number of likes and comments was 411 (SD 653) for each video. The average QUEST score for the selected videos was 14.6 (SD 4.1; Table 1).

A total of 49 Instagram posts were excluded. Of the 50 included eligible posts, 17 (34%) were categorized as “promotional,” 15 (30%) were “educational,” 16 (32%) were “recruitment,” and 2 (4%) were “personal” (Table 1). Organizations were the most common post senders (n=38, 76%) and contributed the majority of promotional (13/17, 77%), educational (9/15, 60%), and recruitment (16/16, 100%) posts (Table 1).

Of the 50 tweets identified, approximately 39 (78%) included images, 3 (6%) had videos, and 8 (16%) were only text. Physicians were the most common tweet senders, with 25 (50%) tweets and the highest average engagement (64.3, SD 178.7 interactions/post). The majority of posts were educational (n=29, 58%).

The majority of the top Facebook groups were private and focused on pemphigus vulgaris support (8/10 groups) with the top 3 Facebook groups having over 1000 members each (Table 2). Of the 25 identified posts, individual posts were the most common (n=17, 68%), while posts made by patients/caregivers generated the highest average engagement (272.2, SD 264.7 interactions/post).

Social media provides an avenue for physicians, patients, and organizations to share educational, personal, and promotional content to improve rare disease awareness [6]. Approximately half of the YouTube videos were made by physicians, yet content made by organizations had the highest engagement. The average QUEST score (14.6, SD 4.1) across the analyzed YouTube videos was higher than those for other dermatologic conditions, suggesting higher quality content [7].

Instagram had the highest portion of nonhuman–related pemphigus content, highlighting a need for more reliable human-related pemphigus information. Although Twitter has the highest rate of medical misinformation, half of the top filtered posts were made by physicians, and the majority of posts were educational [8].

Social media has enhanced clinical trial recruitment, and given the rarity of pemphigus, social media can improve awareness of ongoing clinical trials [9]. However, Twitter and Instagram are the only identified platforms with recruitment posts (2/50, 4% and 16/50, 32%, respectively). Additionally, Facebook groups allow patients to connect with others to discuss disease-related concerns and resources.

The limitations of this study include that our data was collected at a singular time point for each platform with largely descriptive data. Additionally, other platforms such as TikTok, Snapchat, WhatsApp, and Reddit were not analyzed. Future studies should evaluate the accuracy of medical content and implications of misinformation posted on the web.

Current uses of social media for pemphigus revolve around better understanding the disease, developing support groups, and improving awareness. Physicians can use these avenues to connect patients globally to discuss their experiences. Social media also offers a platform for greater clinical trial recruitment for those with rare diseases.