Social Media as a Surveillance Tool for Monitoring of Isotretinoin Adverse Effects

Social media is an underutilized method for the surveillance of the patient perspective regarding their pharmacologic therapies. The purpose of this study was to investigate the nature of content posted on the social media platform Instagram with respect to the systemic acne medication isotretinoin. The search term “#accutane” was queried into Instagram to generate all public posts using this hashtag between February 1 and May 31, 2018. Four independent investigators then scrutinized posts for eligibility. Our inclusion criteria were posts written in English, accessible by URL, primarily focused on isotretinoin, and posted by users of the medication. Data regarding multiple variables (tone of post, reason for positive or negative elements, posting of a face or other body part, mention of side effects, etc.) from each individual post was then entered into a Microsoft Excel template. Of 7,661 posts, 3,082 were eligible. Among posts that contained negative tone (n=1312), this element was more commonly due to the presence of side effects (65%) than lack of improvement in skin appearance (33%). Overall, 1,263 posters (41%) mentioned adverse effects of oral isotretinoin, most commonly dry facial skin (17%), dry/cracked lips (16%), or arthralgias/myalgias (8%). Neuropsychiatric side effects were also documented, with users reporting fatigue (4%), mood changes (3%), and headache (2%). In conclusion, reported side effects of oral isotretinoin on Instagram closely tracked its known side effects in frequency. Social media may be a valuable tool to surveil the general pattern and burden of adverse effects for patients undergoing treatment of dermatologic conditions.