Reviewing the Evidence Base for Topical Steroid Withdrawal Syndrome in the Research Literature and Social Media Platforms: An Evidence Gap Map

Background Within the dermatological community, topical steroid withdrawal syndrome (TSWS) is a medically contested condition with a limited research base. Published studies on TSWS indicate that it is a distinct adverse effect of prolonged use of topical corticosteroids, but there is a paucity of high-quality research evidence. Among the “patient community,” awareness has been increasing, with rapid growth in social media posts on TSWS and the introduction of online communities such as the International Topical Steroid Awareness Network. This evidence gap map (EGM) was developed in response to recent calls for research to better understand TSWS and aims to be an important resource to guide both researchers and clinicians in the prioritization of research topics for further research. Objective This study aims to identify the range, extent, and type of evidence on TSWS in the research literature and social media platforms using an EGM. Methods The MEDLINE and Embase (Ovid), CINAHL (EBSCOhost), and ProQuest Dissertations & Theses and Conference Proceedings Citation Index (CPCI-Science and CPCI-Social Science & Humanities via Web of Science) databases were searched. The final search was run in November 2023. Study titles, abstracts, and full texts were screened by 2 reviewers, and a third was consulted to resolve any differences. Blogging sites WordPress, Medium, and Blogspot and Google were searched; Instagram and Reddit were searched for the 100 most recent posts on specific dates in February 2023. Blog titles, Instagram posts, and Reddit posts were screened for relevance by 2 reviewers. A data extraction tool was developed on EPPI-Reviewer, and data extraction was undertaken by one reviewer and checked by a second; any inconsistencies were resolved through discussion. We did not undertake quality appraisal of the included studies. EPPI-Reviewer and EPPI-Mapper were used to generate the interactive EGM. Results Overall, 81 academic publications and 223 social media posts were included in the EGM. The research evidence mainly addressed the physical symptoms of TSWS (skin), treatments, and, to a lesser extent, risk factors and disease mechanisms. The social media evidence primarily focused on the physical symptoms (skin and nonskin), mental health symptoms, relationships, activities of everyday living, beliefs and attitudes, and treatments. Conclusions The EGM shows that research evidence is growing on TSWS but remains lacking in several important areas: longer-term prospective observational studies to assess the safety of prolonged use of topical corticosteroids and to prevent addiction; qualitative research to understand the lived experience of TSWS; and longitudinal research on the patient’s “TSWS journey” to healing. The inclusion of social media evidence is a methodological innovation in EGMs, recognizing the increased presence of #topicalsteroidwithdrawal on social media and how it can be used to better understand the patient perspective and ultimately, provide better care for people with TSWS.