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Table of Contents
Year : 2022  |  Volume : 40  |  Issue : 3  |  Page : 156-161

YouTube as a source of information for hidradenitis suppurativa treatment

Department of Dermatology, Venereology and Allergology, Medical University of Gdansk, Gdansk, Poland

Date of Submission21-Dec-2021
Date of Decision17-Feb-2022
Date of Acceptance08-Apr-2022
Date of Web Publication23-Aug-2022

Correspondence Address:
Prof. Wioletta Baranska-Rybak
Department of Dermatology, Venereology and Allergology, Medical University of Gdansk, Smoluchowskiego 17, Gdansk 80-214
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/ds.ds_27_22

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Background: Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease characterized by a significant decrease in the patients' quality of life. Patients are increasingly looking for information about HS on social media, including YouTube (YT). However, the quality of the videos in some other diseases has been often scored as poor. Objectives: The aim of this study was to evaluate the usefulness and the quality of the most viewed acne inversa videos on YT. Methods: YT was searched for the keywords “HS” and “acne inversa.” For videos, quality assessment validated DISCERN instrument and the global quality score (GQS) were applied. Furthermore, the popularity of each video using the video power index (VPI) score was evaluated. Results: After applying the exclusion criteria, 34 videos were analyzed. We found that video quality was poor regardless of video type. The mean DISCERN score between the raters was 34.65 ± 10.7, and the mean GQS score was 2.6 ± 0.98. There was no significant correlation between the DISCERN, GQS and VPI, the number of views, likes, dislikes, comments, and video duration. Conclusion: Our study highlights the gaps in knowledge regarding HS treatment on YT. Hence, this information can be used to create superior educational content in the future.

Keywords: Acne inversa, biologic therapy, DISCERN, hidradenitis suppurativa, social media, surgery, treatment, YouTube

How to cite this article:
Lewandowski M, Swierczewska Z, Baranska-Rybak W. YouTube as a source of information for hidradenitis suppurativa treatment. Dermatol Sin 2022;40:156-61

How to cite this URL:
Lewandowski M, Swierczewska Z, Baranska-Rybak W. YouTube as a source of information for hidradenitis suppurativa treatment. Dermatol Sin [serial online] 2022 [cited 2023 Feb 6];40:156-61. Available from: https://www.dermsinica.org/text.asp?2022/40/3/156/354326

  Introduction Top

Health information, patient support, and treatment recommendations are increasingly available through online social media and entertainment platforms.[1],[2] It is believed that about 80% of adult Internet users search for health information online.[3] One of the most popular websites to share such information is YouTube (YT). Since its establishment in 2005, YT has been gathering over 2 billion users per month, and more than 500 h of content is uploaded every minute.[4] According to multiple research, as a video-sharing platform, YT has gone beyond normal text-based information and can not only be a source of information for patients and their families but also an important educational tool. Particularly during a pandemic, it could be among the main data sources patients use to find information about their disease. However, the lack of restrictive regulations on YT allows much of this information to be unregulated, unverified, and often false. Hence, it is essential to assess the quality, usefulness, and adequacy of the medical content obtainable on YT.

The content of YT has previously been investigated in other dermatological conditions.[5],[6] To the best of our knowledge, only one letter to editor tried to bring up the problem and evaluate the quality of the videos related to hidradenitis suppurativa (HS) treatment, hence, no previous original research has assessed this topic thus far.[7]

HS is a chronic, progressive, debilitating, recurrent inflammatory skin disease characterized by the occurrence of very severe, persistent, painful nodules, abscesses, and fistulas, most commonly found in the skin folds of the axilla, groin, gluteal, and perianal areas. Its prevalence range is currently estimated at 0.00033%–4.1%.[8],[9] Due to the significant decrease in the patients' quality of life and a delayed beginning of treatment, the selection of the appropriate therapy is extremely important in these patients.[8],[9],[10]

Our study aimed to evaluate the usefulness and the quality of the most viewed HS videos on YT. By using validated instruments, we intended to discover the most informative videos regarding HS that might be applied to educate patients and their relatives.

  Materials and Methods Top

Search strategy and data collection

Between August 17 and 18, 2021, a YT search for the keywords “HS” and “acne inversa” was conducted. We analyzed videos uploaded between the years 2012 and 2021. The videos were arranged according to YT's default “most viewed” sorting. Google Chrome Browser was used in “incognito mode” without being logged in to any social media account. Permission from YT was not needed to conduct this study as all the data used in our paper was publicly available and no special access was required for collecting the data. Information from reviewed videos was collected in an Excel spreadsheet for further statistical analysis.

Inclusion and exclusion criteria

All videos searched and sorted by “most viewed” criteria, >50,000 views, were taken into consideration. Among them, videos longer than 25-min, duplicate videos, non – English videos, and irrelevant videos were excluded. The remaining videos were included for a thorough investigation. Because DISCERN instrument was created in response to the requirement for a comprehensive set of quality standards for written consumer health information on treatment choices, as it's directly mentioned in the general instructions of DISCERN instrument, we included videos regarding information about HS treatment.

Variables extracted

Data collected for each video included: video URL, duration (minutes), year of upload, days since upload date, the number of views, likes, dislikes, comments, occurrence of diagrams, results of treatment, and type of treatment (surgical, pharmacological, complementary). The videos were classified according to the source: (1) Healthcare and (2) non – healthcare.

Scoring system

We evaluated the videos for the following outcomes: quality, popularity, and viewer engagement. All videos were assessed independently by two raters, a dermatologist with over 20 years of experience, and last-year medical student, both medically trained in HS.

For videos, quality assessment validated DISCERN instrument and the global quality score (GQS) were applied [Table 1] and [Table 2]. DISCERN was created by a group of specialists to help health consumers and information providers assess the quality of written information about treatment choices (e.g., conventional, complementary, psychological) for health problems. It contains 16 questions that assess the clarity, balance, and content of information in any particular publication on a scale of 1 to 5, with 1 indicating that the criteria have not been fulfilled at all, and 5 being that they are entirely fulfilled. The first eight questions concern reliability, the following seven are about treatment information, and the last question is on overall quality. The DISCERN scoring system categorizes objects using a 15–75 point scale. Therefore, DISCERN scores are classified as follows: excellent is denoted by scores ranging from 63 to 75 points, good is denoted by scores of 51 to 62 points, fair is denoted by scores of 39 to 50 points, poor is denoted by scores of 27 to 38 points, and very poor is denoted by scores of 16 to 26 points.
Table 1: DISCERN quality scoring system

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Table 2: Global Quality Scale criteria

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The GQS is an unvalidated but widely used scale for evaluating the quality of Internet resources. It allows users to assess the overall quality of a video's content on a five-point Likert scale. The GQS has a maximum score of 5, indicating that the flow and educational quality is excellent, whereas a score of 1 point indicates the poorest quality.

To evaluate the popularity of each video the video power index (VPI) score was used. The VPI was calculated as follows: like ratio × view ratio/100, the like ratio was defined as (like × 100/[like + dislike]) and the view ratio was defined as (number of views/days).[11],[12]

The DISCERN and VPI score were also correlated to see if the most informative videos were the most popular.

Viewer engagement was measured using an engagement ratio, which was described in previous research as the sum of the number of likes, dislikes, and comments divided by the total number of views.[13]

Statistical methods

The collected data were analyzed in Statistica 13 software approaching ANOVA Kruskal–Wallis test, Mann–Whitney U-test, and Spearman's rank correlation time coefficient test. A P < 0.05 was considered statistically significant. Microsoft Excel 2019 was used for preparing illustrations.

  Results Top

Video contents

Out of the 84 videos assessed, we excluded 50 videos for the following reasons: Thirty-seven irrelevant themes, 5 were longer than 25 min, 4 duplicates, and 4 nonEnglish videos. Therefore, a total of 34 videos were analyzed. Only 6 (17.6%) of the videos had clear content (subjectively, aims were easy to understand and fully implemented). Our study showed that 23 videos regarded information about surgical treatment, 9 about pharmacological treatment, 12 about complementary therapy: most videos 15/34 (44.11%) talked only about surgery, 1/34 (2.94%) only about pharmacological treatment, 6/34 (17.6%) videos about both pharmacological treatment and surgery, 9/34 (26.5%) only about complementary treatment, and only 1 video included information about every type of treatment. Detailed data about videos' content are presented in [Figure 1].
Figure 1: Distribution of videos according to the subject.

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Video upload source

Most videos 21/34 (61.8%) were uploaded by a healthcare source (medical doctor, hospital, private medical clinic), and only 13/34 (38.2%) by a nonhealthcare source.

Video statistics

The overall statistics concerning viewer interaction were measured: the total view count was 17,985,620 (mean, 528,989; range, 58,307–4,785,960). The following are the mean and range for all the quantitative video metrics for all the videos analyzed: number of likes (mean, 5702; range, 290–55,000), number of dislikes (mean, 302; range, 14–1800), number of comments (mean, 630; range, 98–5171), total duration of all videos 5h 46 min. 46 s.(mean, 10 min. 12 s.; range, 1 min. 31 s–23 min. 41 s), and days since upload (mean, 1441 days; range, 320–3390 days).

Video quality evaluation

The two individual raters had a DISCERN score of 34.88 ± 10.62 (range, 21–58) and 34.41 ± 10.94 (range, 21–59), respectively. The mean DISCERN score between the raters was 34.65 ± 10.7 (range, 21–59). The intraclass correlation coefficient for the absolute agreement was 0.99 between the 2 reviewers, which is regarded as excellent reliability. The mean score of question 16 of DISCERN (which demands a comprehensive assessment of the entire video) was 2.68 (range, 1–5) and 2.59 (range, 1–5), respectively. The mean scores of questions 1–15 are presented in [Figure 2].
Figure 2: The mean DISCERN scores of each question. SD: Standard deviation.

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A GQS score, obtained by two individual raters, was 2.59 ± 0.96 (range, 1–5) and 2.62 ± 1.02 (range, 1–5), respectively. The mean GQS score between the raters was 2.6 ± 0.98 (range, 1–5). The intraclass correlation coefficient for the absolute agreement was 0.98 between the two reviewers, which is considered excellent accuracy.

The correlation between DISCERN Score and GQS score was 0.91 (P < 0.00001), assessed using Spearman's rank correlation time coefficient test. There was no significant difference between DISCERN scores depending on the source of the video: healthcare – 36.83 mean versus nonhealthcare – 31.12 mean (P = 0.13). However, healthcare source videos had notably higher GQS scores – 2.9 mean than nonhealthcare source ones – 2.15 mean (P = 0.044).

The mean score for the VPI was 658.33 (range, 19.88–10321.08). The average score concerning healthcare source and the nonhealthcare source was 954 and 180, respectively. The difference between these two scores was not statistically significant (P = 0.23).

There was no significant correlation between the DISCERN, GQS, and VPI, the number of views, likes, dislikes, comments, and video duration.

The videos concerning results of treatment had a remarkably higher VPI score – 1194 ± 706, than those without such information – 182 ± 262 (P = 0.0017). However, there was no notable correlation between the occurrence of results of treatment in the videos and the DISCERN and GQS scores.

Questions from 1 to 8 concerning reliability, achieved significantly higher DISCERN scores (mean; 2.62) than questions 9–15 about the treatment information (mean; 1.95) (P < 0.0001).

Correlations concerning VPI and viewer engagement, as well as VPI and video duration came out as negative nonetheless weak.

Top-quality videos

In our study, the top-rated HS videos, based on the DISCERN criteria, came from the Mayo Clinic, HS-institute, and Cardiff University. Each of the videos had a DISCERN score over 51, and the highest DISCERN score was achieved by the videos from HS Institute and Mayo Clinic, 58.5 and 57.5, respectively. According to the DISCERN scoring system, these videos are categorized into good materials however, none of the reviewed videos obtained a score of 63 or more. Thus, none of the reviewed videos could be referred to as excellent [Table 3].
Table 3: The top 4 quality hidradenitis suppurativa videos based on the DISCERN criteria

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  Discussion Top

We performed our study in response to a large increase in the number of patients who had searched the Internet and applied to our clinic. Because of its ease of access to information, YT is a highly popular social media platform.[14] The use of social media has the potential to help decrease the health literacy gap. Patient satisfaction and treatment adherence may be improved by accessing healthy information on the Internet.[15]

Quality analysis

We found that video quality was poor regardless of video type. Similar findings have been found in the literature.[6],[16] The problem appears to be prevalent since low-quality material in YT videos has recently been reported in a variety of different medical areas, including gastroesophageal reflux disease,[17] deep brain stimulation,[18] and narcolepsy.[19]

Even though the GQS scores were higher among the healthcare source videos, there was no statistically significant difference between DISCERN scores depending on the source of the HS treatment videos. In two other studies, this difference was highly statistically significant, which shows there is a possible need in preparing superior content regarding HS treatment by physicians, hospitals, and universities.[20],[21]

According to our findings, 4 out of the top 5 VPI videos had fair reliability. However, the second most popular video had DISCERN score of 29, which indicates poor quality. Furthermore, the results of our study show that there is no significant correlation between the DISCERN, GQS scores, and VPI. This implies that video popularity, likes, views, or any other metric scale are not reliable tools to assess the credibility of YT videos about HS treatment. The high VPI score of a video might be related to the popularity of the channel or its entertaining qualities. We also found that the healthcare source videos had slightly higher VPI scores than the nonhealthcare sources, but the difference was not statistically significant. In other studies, there was a similar tendency;[22] moreover, some papers show that the VPI was significantly higher among the nonhealthcare source videos,[23] indicating that patients probably do not seek information according to the source of the video.

Treatment outcomes

Only 20.6% of the videos provided information on possible treatment risks, which means that as many as 79.4% left patients without any answers to the question regarding therapy side effects. It is worth mentioning that not more than 3 (8.8%) videos describe what would happen if no treatment is used. These are extremely important aspects that should undoubtedly be addressed in any valuable treatment video. According to our study, the vast majority of the videos applied to surgical treatment – 21 (61.76%), while only a few talked about pharmacological therapy – 9 (26.47%). Merely one video contained information about all types of treatment: surgical, pharmacological, and complementary. It reveals that there is a large issue with the presence of comprehensive and substantive videos.


The present study is the first to use a validated instrument to evaluate the quality of YT videos on the medical management of HS and has several limitations. Since we included only videos in English in our study, videos in other languages may present a different quality. It makes provision for other researchers to evaluate videos in non-English languages. English, on the other hand, is widely regarded as the preferred language for obtaining information online. Nonetheless, it is worth noting that from all videos with more than 50.000 views only 6% of the videos were not in English, which is unquestionably a small percentage. Another limitation is the fact that our research excluded videos that were longer than 25 min. Taking into account the exclusion criteria, and the fact that in our study we evaluated videos with more than 50.000 views, only 34 videos were assessed according to the DISCERN scoring system. However, in a study conducted by Gupta and Ivanova,[5] in which clear conclusions were obtained, using the DISCERN scale, fewer videos were rated related to the total number of videos available on YT according to search categories (respectively 34/9,190 videos in our study versus 90/7,267,500 videos in a study conducted by Gupta and Ivanova). At last, we evaluated only YT videos, whereas other social media were not analyzed.

Future directions

This analysis may be repeated in a few years to evaluate if content quality has changed, especially considering the fact that new videos are posted daily, and the YT database search results vary over time. YT, according to our research and Laughter et al.,[24] provides a chance for health care professionals to educate the public about common dermatologic issues. Thus, we encourage hospitals, universities, and physicians themselves to analyze YT content to prepare superior educational materials so that it contains higher-quality information.

  Conclusions Top

The use of video-based learning is becoming more common in all aspects of life, including the medical field. For patients suffering from HS, YT videos could be an easy way to learn about its management. To the best of our knowledge, this was the first in-depth original research to objectively evaluate the reliability and quality of HS-related information on YT. Reviewed videos showed that the interest in HS among YT users is relatively high, however, the content presented to them is of poor quality. Given the popularity and potential reach of YT, medical practitioners can utilize this platform to reach a broad audience while also giving factual and relevant information regarding HS, minimizing the spread of misinformation. To improve the quality of videos practitioners should be involved in content creation, as well as its verification. We also believe that instruments such as DISCERN and GQS scale may be potential tools for improving the quality of the videos, which indisputably start to be an important element in a holistic approach to the patient.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

  References Top

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  [Figure 1], [Figure 2]

  [Table 1], [Table 2], [Table 3]


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