TCS overuse and withdrawal reactions: a UK lay-person’s perspective

Peacock, Diane

doi:10.3399/bjgp23x732453

Cited by 6 publications

(2 citation statements)

References 7 publications

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“…The 'reluctance to use topical steroids as recommended' [41:1] has been dismissed by many dermatologists as 'steroid phobia', as has TSWS [8]. Arguably, this narrative of blame filters through to GPs who can 'struggle' [38] to support people experiencing TSWS and need guidance from dermatologists on the safe use of TCSs "…in terms of potency, frequency, duration and area of TCS application" [32:1].…”

Section: Treatment Costs and Outcome Measuresmentioning

confidence: 99%

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

Orr,

Rogers,

Stein

et al. 2024

Preprint

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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.

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Section: Treatment Costs and Outcome Measuresmentioning

confidence: 99%

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

Orr,

Rogers,

Stein

et al. 2024

Preprint

View full text Add to dashboard Cite

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“…1 Some patients may stop adhering to dermatological guidance because of fear of TCS, 5 and others may have purchased supplementary TCS from UK-regulated Care Quality Commission/ General Pharmaceutical Council online pharmacies. 6 Others may have symptoms that a recent dermatological joint statement highlighted as 'conditions that could be mistaken for TSW'. 7 Whatever the circumstances (and recognising extreme pressures on primary care), 8 and given that GP practices treat the majority of patients with eczema, I am urging that patients at risk are identified and supported.…”

Section: Referencesmentioning

confidence: 99%

Obesity care in the community

Sharvill

2024

Br J Gen Pract

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Topical steroid withdrawal: a survey of UK dermatologists’ attitudes

Barlow,

Proctor,

Moss

2024

Clinical and Experimental Dermatology

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The term topical steroid withdrawal (TSW) refers to a condition widely discussed on social media, but rarely mentioned in the medical literature. It typically involves a patient with chronic eczema who abruptly discontinues topical corticosteroids (TCS) believing they are ineffective and damaging. Symptoms include an acute eruption, worse than the previous eczema, of painful erythema followed by oozing, crusting, desquamation and sometimes prolonged weakness. Patients self-diagnose and often avoid healthcare professionals who dismiss the diagnosis and persist in offering TCS, leaving them unsupported. We analysed 121 responses to a survey of UK dermatologists’ attitudes to TSW. Views on aetiology included relapsed eczema, erythroderma and a social construct. Eighty-eight percent agreed that TSW needs better understanding and more research. Respondents earlier in their careers are more cautious than seniors about prescribing TCS long-term because of TSW, suggesting a trend that might lead to better understanding, communication and management.

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TCS overuse and withdrawal reactions: a UK lay-person’s perspective

Cited by 6 publications

References 7 publications

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

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

Obesity care in the community

Topical steroid withdrawal: a survey of UK dermatologists’ attitudes

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