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Evaluating the quality and readability of online information about hidradenitis suppurativa: a systematic review
Marra Aghajani1, Ericka Maye1, Kate Burrell1
1The Skin Hospital, Sydney, NSW, Australia.
Abstract:
Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder associated with considerable physical, psychological and social burdens. Despite increasing recognition, diagnostic delays remain common, often prompting patients to seek information online. In this systematic review, we evaluated the quality and readability of HS-related information across artificial intelligence (AI)-generated content, search--engine-derived resources and social media platforms. A comprehensive search of PubMed, Embase, Cochrane Library and Google Scholar identified 17 studies published between 2017 and 2024 that assessed HS-related online content using validated scoring tools and/or physician evaluation. More than 50% of studies rated online HS materials as variable in quality, with 36% rating them as moderate. Readability -assessments revealed that most resources exceeded the recommended sixth-grade to eighth-grade school level, limiting accessibility for patients. Social media platforms, particularly TikTok and YouTube, featured highly engaging but frequently inaccurate or anecdotal content, with physician-generated materials receiving lower engagement than nonmedical resources. These findings highlight the critical need for simplified, -evidence-based online resources to improve health literacy and support informed decision-making by patients with HS. The prevalence of misinformation, particularly regarding alternative treatments and pharmaceutical scepticism, underscores the urgent need to develop enhanced patient education strategies. Future efforts should focus on AI-driven readability improvements, clinician engagement in digital education and collaboration with social media platforms to ensure the availability of accessible, high-quality HS information.
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