JMIR Publications

ABSTRACT

Background:

Topical Steroid Withdrawal Syndrome (TSWS) is a distinct adverse effect of prolonged use of topical corticosteroids (TCSs). It is a medically contested condition within the dermatological community and consequently, has a limited evidence base and a paucity of high quality research. Amongst the ‘patient community’ awareness has been increasing, with rapid growth in social media posts on TSWS and the introduction of online communities such as ITSAN (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 prioritisation of research topics for further research.

Objective:

This study aimed 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 (via Ovid), CINAHL (via EBSCOhost), ProQuest Dissertations & Theses and Conference Proceedings Citation Index (CPCI-S and CPCI-SSH via Web of Science) databases were searched. The final search was run in November 2023. Study titles, abstracts and full texts were screened by two 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 and Reddit posts were screened for relevance by two reviewers. A data extraction tool was developed on EPPI Reviewer and data extraction was undertaken by one reviewer, checked by a second and any inconsistencies resolved through discussion. We did not undertake quality appraisal of included studies and social media evidence. EPPI-Reviewer and EPPI-Mapper were used to generate the interactive EGM.

Results:

Eighty-two 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, while the social media evidence primarily focused on the physical symptoms (skin and non-skin), 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 a number of important areas: longer-term prospect observational studies to assess the safety of prolonged use of TCSs and 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 and recognises 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.