This paper is in the following e-collection/theme issue:

Research Letter (75) World Wide Web and Social Media in Dermatology (37) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1553) Infodemiology and Infoveillance (1270) Infoveillance, Infodemiology, Digital Disease Surveillance, Infodemic Management (1010)

Published on in Vol 6 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/50011, first published .
A Social Media Analysis of Pemphigus

A Social Media Analysis of Pemphigus

A Social Media Analysis of Pemphigus

Authors of this article:

Gaurav Nitin Pathak1, 2 Author Orcid Image ;   Rithi John Chandy1, 2 Author Orcid Image ;   Vidisha Naini1, 2 Author Orcid Image ;   Shazli Razi3, 4 Author Orcid Image ;   Steven R Feldman2, 5, 6, 7 Author Orcid Image
Article Authors Cited by Tweetations (3) Metrics

    Research Letter

    1Department of Dermatology, Rutgers Robert Wood Johnson Medical School, Somerset, NJ, United States

    2Department of Dermatology, Wake Forest University School of Medicine, Winston-Salem, NC, United States

    3Department of Dermatology, Rao Dermatology, Atlantic Highlands, NJ, United States

    4Department of Internal Medicine, Jersey Shore University Medical Center, Neptune, NJ, United States

    5Department of Pathology, Wake Forest University School of Medicine, Winston-Salem, NC, United States

    6Department of Social Sciences and Health Policy, Wake Forest University School of Medicine, Winston-Salem, NC, United States

    7Department of Dermatology, University of Southern Denmark, Odense, Denmark

    Corresponding Author:

    Gaurav Nitin Pathak, PharmD

    Department of Dermatology

    Rutgers Robert Wood Johnson Medical School

    1 Worlds Fair Drive

    Somerset, NJ, 08873

    United States

    Phone: 1 6096478607

    Email: gnp28@rwjms.rutgers.edu




    In 2021, an estimated 4.26 billion people reported using some type of social media including approximately 80% of dermatology patients [1]. Social media has advanced health research and practice, enhanced social mobilization, and facilitated health services and events [2]. Approximately 61% of US adults utilize the web for health-related information, most commonly for diseases and treatments [3].

    Pemphigus represents a spectrum of autoimmune skin-blistering diseases, with a prevalence of 5.2 cases per 100,000 adults, and is associated with diagnostic delay [4,5]. Social media may be used to shorten diagnostic delays, disseminate disease information, and connect affected individuals to support groups. The purpose of this study is to characterize the most popular and recent social media footprint of pemphigus across common social media platforms.


    Four social media platforms—Facebook, Instagram, YouTube, and Twitter—were evaluated using the search term “pemphigus.” Data collection was conducted at singular date cutoff timepoints to collectively evaluate the most recent and popular social media content. Only English content related to human pemphigus was included. The exclusion criteria were posts that discussed nonhuman pemphigus, non-English content, and YouTube videos longer than 20 minutes. The Quality Evaluation Scoring Tool (QUEST) score is a validated metric used to analyze the quality of medical content posted on the web and was used to evaluate content on YouTube. Details regarding the data collection process are available in Multimedia Appendix 1.


    YouTube

    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).

    Table 1. Analysis of top YouTube, Instagram, and Twitter content.
    Author or content categoryViews/postsa, nPost sender or type of content, n (%)EngagementbQUESTc score, mean (SD)
    Top 10 YouTube videos
    • N/Ad



    		1. Physician, educational50,718
    • 601
    		19 (1.4)

    		2. Patient/organization, personal1726
    • Not disclosed
    		9.5 (2.1)

    		3. Health care professional, educational7222
    • 150
    		11 (0.0)

    		4. Physician, educational4367
    • 37
    		19.5 (3.5)

    		5. Physician, educational171
    • 2
    		20 (2.8)

    		6. Organization, educational115,321
    • 1983
    		13.5 (0.7)

    		7. Organization, educational3442
    • 36
    		9.5(0.7)

    		8. Organization, educational44,549
    • 781
    		13 (0.0)

    		9. Physician, educational2844
    • 60
    		18 (0.0)

    		10. Organization, educational3677
    • 50
    		12.5 (0.7)
    Top 50 Instagram postN/A

    		Promotional17
    • Organization: 13 (76)
    • Physician/Professor: 4 (24)
    • Likes, n: 240
    • Likes, mean (SD): 14.1 (11.6)
    • Comments, n: 13


    		Educational15
    • Organization: 9 (60)
    • Physician: 3 (20)
    • Patient: 3 (20)
    • Likes, n: 321
    • Likes, mean (SD): 21.4 (32.3)
    • Comments, n: 8


    		Recruitment16
    • Organization: 16 (100)
    • Likes, n: 151
    • Likes, mean (SD): 9.44 (5.2)
    • Comments, n: 5


    		Personal2
    • Patient: 2 (100)
    • Likes, n: 33
    • Likes, mean (SD): 16.5 (19.5)
    • Comments, n: 18

    Top 50 Twitter postsN/A

    		Physician25
    • Educational: 16 (64)
    • Personal: 7 (28)
    • Promotional 2 (8)
    • Total: 1608
    • Int/Poste, mean (SD): 64.3 (178.7)


    		Patients/individuals3
    • Personal: 2 (67)
    • Educational: 1 (33)
    • Total: 10
    • Int/Post, mean (SD): 3.3 (0.6)


    		Organization15
    • Educational: 9 (60)
    • Personal: 2 (13)
    • Promotional: 3 (20)
    • Recruitment: 1 (7)
    • Total: 101
    • Int/Post, mean (SD): 6.7 (5.8)


    		Pharmaceutical company1
    • Recruitment: 1 (100)
    • Total: 25
    • Int/Post: 25


    		Promoter2
    • Promotional: 2 (100)
    • Total: 0 (17 video views)
    • Int/Post: 0


    		Researcher4
    • Educational: 2 (50)
    • Personal: 1 (25)
    • Promotional: 1 (25)
    • Total: 54
    • Int/Post, mean (SD): 13.5 (17.3)

    aFor YouTube, this column is a count of views for each video. For Instagram and Twitter, this column is the count of posts for each category.

    bFor YouTube, engagement is the total number of likes + comments for each video. For Instagram, engagement includes the total number of likes and comments and the average number of likes for each category of post. For Twitter, engagement includes the total number of likes + retweets + comments, as well as the average interactions per post.

    cQUEST: Quality Evaluation Scoring Tool.

    dN/A: not applicable.

    eInt/Post: interactions per post.

    Instagram

    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).

    Twitter

    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%).

    Facebook

    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).

    Table 2. Analysis of Facebook support group and post content.

    		Access typePosts, nMembers, nType of content, n (%)ActivityTotal engagement (likes/reactions + shares + comments) and Int/Posta
    Top 10 Facebook support groupsN/Ab
    • N/A

    • N/A

    		1. Pemphigus VulgarisPrivatec
    		4900
    		4 posts/day

    		2. Pemphigus VulgarisPrivate
    		2300
    		9 posts/week

    		3. Pemphigus Vulgaris Support and AwarenessPrivate
    		1400
    		2 posts/month

    		4. Pemphigus VulgarisPublic
    		112
    		0 posts

    		5. Pemphigoid and Pemphigus NationPublic
    		244
    		8 posts/year

    		6. Living with Pemphigus FoliaceusPrivate
    		350
    		2 posts/week

    		7. Pemphigus Vulgaris in IndiaPrivate
    		300
    		1 post/month

    		8. Pray4Elyse MCD Castleman’s Disease/Paraneoplastic pemphigusPublic
    		90
    		3 post/year

    		9. Pemphigus and Pemphigoid Australia/NZPrivate
    		90
    		0 posts/week

    		10. Pemphigus Vulgaris VictoriaPrivate
    		4
    		2 posts/month
    Top 25 Facebook postsN/A
    		N/A
    		N/A

    		Physician
    		0
    • N/A

    • Total: 0
    • Int/Post: 0

    		Patient/caregiver
    		5
    • Personal: 4 (80)
    • Educational: 1 (20)

    • Total: 1361
    • Int/Post, mean (SD): 272.2 (264.7)

    		Individual
    		17
    • Awareness: 16 (94)
    • Educational: 1 (6)

    • Total: 432
    • Int/Post, mean (SD): 25.4 (17.7)

    		Organization
    		2
    • Educational 2 (100)

    • Total: 359
    • Int/Post, mean (SD): 179.5 (248.2)

    aInt/Post: interactions per post.

    bN/A: not applicable.

    cPrivate groups require admin approval before content can be accessed by the user.


    Principal Findings

    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.

    Limitations and Future Directions

    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.

    Conclusion

    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.

    Conflicts of Interest

    SRF has received research, speaking, or consulting support from AbbVie, Accordant, Almirall, Alvotech, Amgen, Arcutis, Arena, Argenx, Biocon, Boehringer Ingelheim, Bristol-Myers Squibb, Dermavant, Eli Lilly and Company, Eurofins, Forte, Galderma, Helsinn, Janssen, Leo Pharma, Micreos, Mylan, Novartis, Ono, Ortho Dermatology, Pfizer, Regeneron, Samsung, Sanofi, Sun Pharma, UCB, Verrica, Voluntis, and vTv Therapeutics. He is the founder and part owner of Causa Research and holds stock in Sensal Health. All other authors have no conflicts of interest to declare.

    Multimedia Appendix 1

    Supplementary methods.

    DOCX File , 14 KB
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    4. Wertenteil S, Garg A, Strunk A, Alloo A. Prevalence estimates for pemphigus in the United States: a sex- and age-adjusted population analysis. JAMA Dermatol. May 01, 2019;155(5):627-629. [FREE Full text] [CrossRef] [Medline]
    5. Marinović B, Miše J, Jukić IL, Bukvić Mokos Z. Pemphigus-the crux of clinics, research, and treatment during the COVID-19 pandemic. Biomedicines. Oct 28, 2021;9(11):1555. [FREE Full text] [CrossRef] [Medline]
    6. Yabumoto M, Miller E, Rao A, Tabor HK, Ormond KE, Halley MC. Perspectives of rare disease social media group participants on engaging with genetic counselors: mixed methods study. J Med Internet Res. Dec 21, 2022;24(12):e42084. [FREE Full text] [CrossRef] [Medline]
    7. Okagbue HI, Oguntunde PE, Bishop SA, Obasi ECM, Opanuga AA, Ogundile OP. Review on the reliability of medical contents on YouTube. Int J Online Biomed Eng. Jan 21, 2020;16(01):83. [CrossRef]
    8. Suarez-Lledo V, Alvarez-Galvez J. Prevalence of health misinformation on social media: systematic review. J Med Internet Res. Jan 20, 2021;23(1):e17187. [FREE Full text] [CrossRef] [Medline]
    9. Matthews R, Ali Z. Comorbid mental health issues in patients with pemphigus vulgaris and pemphigus foliaceus. Clin Exp Dermatol. Jan 2022;47(1):24-29. [CrossRef] [Medline]

    ‎
    QUEST: Quality Evaluation Scoring Tool

    Edited by R Dellavalle; submitted 16.06.23; peer-reviewed by V Long, E Said-Hung; comments to author 13.09.23; revised version received 22.09.23; accepted 25.09.23; published 19.10.23.

    Copyright

    ©Gaurav Nitin Pathak, Rithi John Chandy, Vidisha Naini, Shazli Razi, Steven R Feldman. Originally published in JMIR Dermatology (http://derma.jmir.org), 19.10.2023.

    This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Dermatology, is properly cited. The complete bibliographic information, a link to the original publication on http://derma.jmir.org, as well as this copyright and license information must be included.