ABSTRACT
Hidradenitis suppurativa (HS) or acne inversa is a chronic inflammatory skin condition characterised by painful nodules that significantly diminish quality of life. Patients diagnosed with HS commonly utilise online resources to gain insight into their condition. This study aimed to assess the readability, quality and relevance of 115 online HS resources found via Google. It was found that most of the websites exceeded the recommended 6th‐grade reading level, with the average being around the 11th‐grade level. JAMA and DISCERN criteria were used to assess the quality of the resources, which revealed limited reliability and timeliness. Our findings emphasise the need for accessible, high‐quality, and up‐to‐date online resources to support informed decision‐making for HS patients and promote prompt medical care.
Keywords: acne inversa, hidradenitis suppurativa, online resources, readability
Hidradenitis suppurativa (HS), a chronic inflammatory skin condition characterised by painful recurrent nodules and abscesses, has one of the most significant impacts on quality of life among all skin diseases [1]. Patients living with HS often face delayed diagnosis and unmet care needs, prompting them to seek information through online resources and social media [2]. In this study, we aim to evaluate the readability, quality and timeliness of online educational content on HS.
To identify patient resources available for HS, Google searches were conducted in January 2025 using keywords ‘hidradenitis suppurativa’ and ‘acne inversa’. Two IP addresses from London, England and Toronto, Canada were used to account for geographic variability in search engine results. The first 60 terms per keyword from each IP were evaluated. Duplicates, advertisements, scientific articles and paywall‐restricted resources were excluded to isolate resources intended for HS patients. Eligible websites were analysed with five well‐validated readability scales corresponding with grade level readability (Flesch–Kincaid grade level, Gunning–Fog index, SMOG index, Coleman–Liau index, and automated readability index) [3]. Quality was assessed with the Journal of American Medical Association benchmark criteria and Discern instrument [4]. To evaluate for timeliness, websites describing treatments were analysed for mention of secukinumab, the most recently approved biologic for hidradenitis suppurativa in 2023.
Of the top 240 searches, 115 websites met the inclusion criteria. The readability analysis (Table 1) revealed only one website (WebMD) written at the 6th‐grade level, as recommended by the American Medical Association [5]. Within the top 15 most searched websites by keyword, none met this recommendation. The average readability across all 115 websites was at the 11th‐grade level (11.7, range 6.3–13.4). Fourteen websites (12.2%) required university‐level (≥ 13) comprehension, with Netmeds and National Library of Medicine at the highest level (13.4). Regarding website quality, the mean modified Discern score was 3.5; 23 of 115 (20%) websites received the full 5 points. The mean modified JAMA score was 2.3, with only 21 of 115 (18.3%) websites achieving all four points. Author names were disclosed on 51.3% of websites, with 38.3% written by authors with an MD or PhD‐equivalent degree. The date of publication or modification was provided in 67.8% of websites, with 79.5% written after 2020. Treatments were mentioned in 82 of 115 (71.3%) websites, of which only 16 (19.5%) mentioned secukinumab.
TABLE 1.
Characteristics, readability and quality of most searched educational websites on hidradenitis suppurativa.
| Website name | Average readability grade level |
|---|---|
| Top 15 most searched websites with keyword “hidradenitis suppurativa” | |
| WebMD | 8.0 |
| American Academy of Dermatology Association | 8.7 |
| Cedars Sinai | 8.8 |
| Medline Plus | 9.3 |
| Cleveland Clinic | 10.1 |
| Mayo Clinic | 10.5 |
| National Institute of Arthritis and Musculoskeletal and Skin | 10.5 |
| Diseases | 10.9 |
| Healthline | 11.3 |
| Canadian Dermatology Association | 12.2 |
| Skinsignt | 12.3 |
| Wikipedia | 12.4 |
| National Health Service (NHS) | 12.4 |
| Medical News Today | 12.9 |
| Up To Date | 13.3 |
| DermNet | |
| Top 15 most searched websites with keyword “acne inversa” | 9.1 |
| Society for Paediatric Dermatology | 10.6 |
| Medical News Today | 11.5 |
| University Hospital Zurich | 11.5 |
| Verywell Health | 11.5 |
| Canadian Hidradenitis Suppurativa Foundation | 11.6 |
| Westlake Dermatology | 12.1 |
| National Health Service | 12.1 |
| Hautwerk | 12.5 |
| Harvard Health Publishing | 12.6 |
| Atlantic Surgical Associates | 12.7 |
| Lumine Dermatology | 12.7 |
| GenomeNet | 12.7 |
| Melbourne Functional Medicine | 12.8 |
| Healthline | 13.0 |
| Dermatology Advisor |
| Website characteristics (n = 115) | N (%) |
|---|---|
| Author name provided | 59 (51.3) |
| Author degree | |
| Not provided | 57 (49.6) |
| MD or PhD equivalent | 44 (38.3) |
| Other | 14 (12.2) |
| Author is a dermatologist (n = 44) | 34 (77.3) |
| Secukinumab mentioned | 12 (10.4) |
| Year written/modified mentioned | 78 (67.8) |
| Written or modified in 2020 or later (n = 78) | 62 (79.5) |
| Overall website readabilitya | Mean ± SD (range) |
|---|---|
| Flesch–Kincaid grade level | 10.7 ± 1.8 (4.4–12) |
| Gunning‐Fog score | 14.0 ± 2.7 (6.4–19) |
| SMOG Index | 11.7 ± 0.7 (8.1–12) |
| Coleman‐Liau Index | 11.9 ± 0.4 (7.9–12) |
| Automated readability Index | 10.2 ± 2.0 (3.3–12) |
| Average readability grade level b | 11.7 ± 2.2 (6.3–13.4) |
| Overall website quality score | Mean ± SD (range) |
|---|---|
| Modified Discern score c | 3.5 ± 1.1 (1–5) |
| Modified JAMA score d | 2.3 ± 1.2 (0–4) |
Abbreviations: JAMA: Journal of American Medical Association; MD: Doctor of Medicine; PhD: Doctor of Philosophy; QoL: quality of life; SD: standard deviation; SMOG: Simple Measure of Gobbledygook.
Considers variables such as sentence length and word complexity. All readability scales were based on the US education level likely needed to comprehend the inputted text.
The readability score was determined by averaging the Flesch–Kincaid grade level, Gunning‐Fog score, SMOG Index, Coleman‐Liau index, and Automated Readability Index. This score represents the average grade school education level required to comprehend the material.
Scored out of 5 in total, assessing the clarity, reliability, and overall quality of the given text.
Scored out of 4 in total, where the assessed domains are authorship, attribution (e.g., references), disclosure (of ownership and sponsorships), and currency (e.g., date posted).
These results highlight a pressing need to increase the quality and timeliness of online information for HS. Seven commonly visited websites had poor or very poor quality primarily in regard to referencing reliable sources and availability of further resources for readers. Websites like DermNet and OMIM were high quality and ranked highly in Google searches, but required university‐level comprehension, making them unsuitable for some patients. Notably, the Canadian Hidradenitis Suppurativa Foundation required a near‐grade 12 readability level, despite being intended for patients. Previous studies examining the online readability for HS have demonstrated similar results, with several studies demonstrating the overwhelmingly high reading level of available resources, making the comprehension of available resources limited to the general population [6, 7, 8, 9]. One study in particular consisting of 50 websites noted that all were above the recommended 5th grade reading level [8]. Another used the Lix score to categorise 458 online resources and found an average score of 57, indicating a difficult level of comprehension suitable for official texts [9]. One gap in the literature is assessment of the timeliness and relevance of the literature, which our study aims to fill. Our findings suggest that online resources generally provide current information on HS but lack updates regarding ongoing treatment advancements. Collectively, these findings highlight the broader issue of the readability of online health material in dermatology and emphasises the need for more understandable and relevant information to be accessible to the public. However, online readability calculators, which rely on standardised formulas, may not accurately reflect the true readability of material. As early intervention in HS aids in mitigating disease progression and reducing physical and psychological sequelae, accessible online resources may play a crucial role in encouraging patients to seek timely consultation. Moreover, with the development of small molecule and biologic therapy for HS, understandable online content is essential for facilitating effective shared decision‐making between patients and physicians. The present study was limited by differences in search engine optimisation and cookies, which may have impacted the reproducibility of results, and the lack of data on the accuracy of material.
Revisions and improvements to existing and future HS online resources are essential. Dermatologists should advocate for these changes to ensure patients have access to reliable and understandable health information.
Consent
The authors have nothing to report.
Conflicts of Interest
Dr. Vincent Piguet has received grants from AbbVie, Bausch Health, Celgene, Eli Lilly, Incyte, Janssen, LEO Pharma, L'Oréal, Novartis, Organon, Pfizer, Sandoz, Sanofi and Bristol Myers Squibb; received payment or honoraria for speaking engagement from Sanofi; participated on an advisory board for LEO Pharma, Novartis, Sanofi, Union Therapeutics, AbbVie and UCB; and received equipment donation from L'Oréal. Dr. Ilya Mukovozov has participated in advisory boards for Catalytic Health Inc., CeraVe, Galderma, Kenvue, L'Oreal Canada, Pfizer, RBC Consultants, and Sun Pharmaceuticals; received honoraria for speaking engagement from AbbVie, Novartis, Pfizer, and Sun Pharmaceuticals. No other authors have conflicts of interest to disclose.
Funding: The authors received no specific funding for this work.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.
References
- 1. Daveluy S. and Okoye G. A., “Quality of Life and the Patient Journey in Hidradenitis Suppurativa,” Journal of the American Academy of Dermatology 91, no. 6S (2024): S8–S11, 10.1016/j.jaad.2024.09.008. [DOI] [PubMed] [Google Scholar]
- 2. Kirby J. S., Martorell A., Sayed C. J., et al., “Understanding the Real‐World Patient Journey and Unmet Needs of People With Hidradenitis Suppurativa Through Social Media Research,” British Journal of Dermatology 189, no. 2 (2023): 228–230, 10.1093/bjd/ljad104. [DOI] [PubMed] [Google Scholar]
- 3. Readability Calculator . accessed January 16, 2025, https://www.wordcalc.com/readability/.
- 4. De D. R., Seivright J., Yee D., Hsiao J. L., and Shi V. Y., “Readability, Quality, and Timeliness of Patient Online Health Resources for Urticaria,” Journal of the American Academy of Dermatology 86, no. 5 (2022): 1182–1185, 10.1016/j.jaad.2021.04.089. [DOI] [PubMed] [Google Scholar]
- 5. Weiss B., Schwartzberg J., Davis T., Parker R. M., Sokol P., and Williams M., Health Literacy and Patient Safety: Help Patients Understand Manual for Clinicians, Second Edition, Second ed. (American Medical Association Foundation, 2007). [Google Scholar]
- 6. Karamitros G., Antonios‐Vlachos G., Kok C., Goulas S., and Lamaris G. A., “Evaluating the Internet as a Source of Information for Patients With Hidradenitis Suppurativa: A Review of Websites' Content, Insights Into Engagement, and Access,” Dermatologic Surgery : Official Publication for American Society for Dermatologic Surgery [Et Al.] 50, no. 12 (2024): 1167–1174, 10.1097/DSS.0000000000004323. [DOI] [PubMed] [Google Scholar]
- 7. Li K., Bouadi N., Jeremian R., Bi W. G., Piguet V., and Croitoru D., “A Comparative Analysis of Hidradenitis Suppurativa and Acne Inversa Web Pages,” Clinical and Experimental Dermatology 49, no. 12 (2024): 1695–1697, 10.1093/ced/llae251. [DOI] [PubMed] [Google Scholar]
- 8. Shukla N. R., Jia J. L., Paul M., Kaghazchi A., Linos E., and Naik H. B., “Quality and Engagement of Online Hidradenitis Suppurativa Information,” International Journal of Women's Dermatology 7, no. 4 (2021): 490–491, 10.1016/j.ijwd.2021.02.005. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Skrzypczak T., Skrzypczak A., and Szepietowski J. C., “Hidradenitis Suppurativa Online Documents Readability: An Analysis Including 23 European Languages,” Clinical, Cosmetic and Investigational Dermatology 17 (2024): 853–862, 10.2147/CCID.S463861. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.