Evaluating the Internet as a Source of Information for Patients With Hidradenitis Suppurativa: A Review of Websites' Content, Insights Into Engagement, and Access

Abstract

BACKGROUND The Internet has become the primary information source for patients, with most turning to online resources before seeking medical advice. OBJECTIVE The aim of this study is to evaluate the quality of online information on hidradenitis suppurativa available to patients. METHODS The authors performed an Internet search using the search terms “hidradenitis suppurativa,” “hidradenitis suppurativa treatment,” “hidradenitis suppurativa surgery,” and “acne inversa.” They identified the initial 100 websites from Google, Yahoo, and Bing. Websites were evaluated based on the modified Ensuring Quality Information for Patients instrument. RESULTS Of the 300 websites, 95 (31.7%) were incorporated after accounting for the exclusion criteria: duplicate entries, websites not pertinent to the subject matter, websites inaccessible due to location restrictions or necessitating user accounts for access, websites in languages other than English, and websites originating from scientific publications directed at a scientific audience rather than the general population. Ensuring Quality Information for Patients scores ranged from 5 to 30/36, with a median of 17. CONCLUSION This analysis unveils a diverse array of websites that could confound patients navigating toward high-caliber resources. These barriers may hinder the access to top-tier online patient information and magnify disparities in referral rates, patient engagement, treatment satisfaction, and quality of life.