Usage of digital information and communications technologies in patients with hidradenitis suppurativa

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease characterized by nodules, draining sinus tracts, and abscesses in intertriginous regions. The reported prevalence of HS ranges from 0.4% to 4% with an average age of HS disease onset at 23 years.¹ Given the early onset of HS and the advocated use of dedicated social network channels,² we explored the current use of information and communications technologies (ICT) in adult HS patients.

Data on adult outpatients with HS from the Department of Dermatology at Bispebjerg Hospital from February to September 2020 was obtained through clinical examination and a survey about ICT usage. ICTs were categorized into three groups (Figure 1).

Of 48 HS patients included, 79.2% were female, the mean age was 38.4 (SD = 11.1) years, and all patients had internet access (Table 1). Daily, patients generally used one-to-one and one-to-many ICT platforms most often (both 93.8%), followed by many-to-many ICTs (47.9%). Web browsers (91.7%), Facebook/Messenger (81.3%), and SMS (81.3%) had the most daily users. There was a numerical, but statistically nonsignificant, difference between Hurley stages of users of many-to-many ICTs (42.4% of Hurley II + III versus. 60% of Hurley I, p = 0.26). We found no association between the daily use of ICTs and VAS bother score,³ family history of HS, number of boils in the last month, and IHS4.⁴ There was a statistically significant association between daily ICT use and median disease duration for many-to-many ICTs (p = 0.03), but not for one-to-one and one-to-many (Table 1). One-to-many was the preferred ICT category for obtaining general health information (89.6%) and for HS-related information (81.3%). Information obtained through one-to-one ICTs was more frequently rated as very interesting and of good quality for general health information (53.3%) and HS-related information (50%) compared to one-to-many (48.8%; 45.9%).

When asked about their interest in receiving HS-related information through various ICTs, 68.1% of patients with HS expressed high interest (either ‘very’ or ‘extremely’ interested) in one-to-one ICT, followed by one-to-many (58.7%), and many-to-many (17%). Patients favoured receiving HS disease-related information via email (62.5%) among all available ICT options.

Similar results have been reported in a global study that utilized the same ICT usage survey with patients with chronic urticaria.⁵ The authors found a preference for web browsers (74.6%) as the primary ICT tool for urticaria information. This might indicate the patients' inclination toward acquiring health-related information from search engines and a vast source of information, including accredited medical organizations. The second most favoured ICT tool for patients with chronic urticaria was YouTube, while for patients with HS, Facebook/Messenger emerged as their second most favoured ICT platform. The preference for different ICTs might be attributed to patients seeking patient organizations on Facebook in Denmark which currently has more than 3000 members. These organizations serve as forums where individuals share experiences, treatments, and practical insights, including advice on bandages and various techniques to alleviate symptoms. When examining a broader perspective of social media use for health information it is reported that addressing and mitigating risks (e.g., misinformation) associated with technology use is crucial for maximizing its potential.⁶

Our findings indicate that adults with HS predominantly utilize web browsers as their primary ICT platform to gather information about their condition. However, only half rated the information as interesting and of good quality. These results could aid in crafting future HS-related informational sites of high quality tailored to the preferred ICT choices of patients with HS.

With no relation to the present manuscript, Simon F. Thomsen has received research support from Janssen, LEO Pharma, Novartis, Sanofi and UCB, and has been a speaker/consultant for AbbVie, Almirall, Eli Lilly, Galderma, Janssen, LEO Pharma, Novartis, Pfizer, Sanofi, Symphogen, UCB, and Union Therapeutics. Marcus Maurer has no conflicts of interest in relation to this manuscript. Outside of it, Marcus Maurer is or recently was a speaker and/or advisor for and/or has received research funding from Allakos, Almirall, Alvotech, Amgen, Aquestive, Aralez, AstraZeneca, Bayer, Celldex, Celltrion, Evommune, GSK, Ipsen, Janssen, Kyowa Kirin, Leo Pharma, Lilly, Menarini, Mitsubishi Tanabe Pharma, Moxie, Noucor, Novartis, Orion, Pfizer, Resoncance Medicine, Sanofi/Regeneron, Septerna, Third Harmonic Bio, ValenzaBio, Yuhan Corporation, and Zurabio. Outside the submitted work, Alexander Egeberg has received research funding from Almirall, Pfizer, Eli Lilly, Novartis, Bristol-Myers Squibb, AbbVie, Janssen Pharmaceuticals, Boehringer Ingelheim, the Danish National Psoriasis Foundation, the Simon Spies Foundation, and the Kgl Hofbundtmager Aage Bang Foundation, and honoraria as consultant and/or speaker from Amgen, AbbVie, Almirall, Leo Pharma, Zuellig Pharma Ltd., Galápagos NV, Sun Pharmaceuticals, Samsung Bioepis Co., Ltd., Pfizer, Eli Lilly and Company, Novartis, Union Therapeutics, Galderma, Dermavant, UCB, Mylan, Bristol-Myers Squibb, McNeil Consumer Healthcare, Horizon Therapeutics, Boehringer Ingelheim, and Janssen Pharmaceuticals. Jacob P. Thyssen is an advisor for AbbVie, Almirall, Arena Pharmaceuticals, Coloplast, OM Pharma, Aslan Pharmaceuticals, Union Therapeutics, Eli Lilly & Co, LEO Pharma, Pfizer, Regeneron, and Sanofi-Genzyme, a speaker for AbbVie, Almirall, Eli Lilly & Co, LEO Pharma, Pfizer, Regeneron, and Sanofi-Genzyme, and received research grants from Pfizer, Regeneron, and Sanofi-Genzyme. Dr. Thyssen is a full-time employee at Leo Pharma. The remaining authors report no conflict of interest.

Nadja H. Pedersen and Valdemar W. Nielsen had full access to all data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Simon F. Thomsen, Valdemar W. Nielsen and Nadja H. Pedersen: Study concept and design. All authors: Acquisition, analysis, and interpretation of data. Nadja H. Pedersen: Drafting of the manuscript. All authors: Critical revision of the manuscript for important intellectual content. Nadja H. Pedersen and Valdemar W. Nielsen: Statistical analysis. Obtained funding: None. All authors: Administrative, technical, or material support. Simon F. Thomsen: Study supervision.

Ethical approval is not required for non-interventional studies in Denmark. All patients in this manuscript have given written informed consent for participation in the study and the use of their deidentified, anonymized, aggregated data and their case details for publication.