Topical steroid withdrawal through the lens of social media

Bowe, Stephanie; Masterson, Sophie; Murray, Gregg R.; Haugh, Isabel

doi:10.1111/ced.15194

Cited by 10 publications

(7 citation statements)

References 6 publications

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“…Mapping both research evidence and social media evidence is a methodological innovation in the production of EGMs. The inclusion of social media evidence was in recognition of the increased presence of #topicalsteroidwithdrawal on social media [15], and how social media content could contribute to understanding the patient perspective of TSWS. Social media is increasingly used by qualitative health researchers and there has been some interest in social media within the dermatological community [43].…”

Section: Strengths and Limitationsmentioning

confidence: 99%

“…Although the MHRA described TSWS as 'rare', it is estimated to occur in approximately 12% of people with atopic dermatitis who use TCSs [4]. Evidence for the increasing awareness of TSWS is demonstrated by the rapid growth in social media posts and discussions on TSWS [3,[15][16] and the introduction of online communities such as ITSAN (International Topical Steroid Awareness Network) and Scratch That, UK. It suggests that people living with TSWS are using social media for information and support, particularly as patients have reported feeling ignored, dismissed or blamed by their doctors for inappropriate use of TCSs [17][18].…”

Section: Introductionmentioning

confidence: 99%

“…For many dermatologists and clinicians, however, social media is perceived negatively as a key source of misinformation [8,19] and a driver of patient self-diagnosis [20]. In contrast, Bowe et al suggested that an awareness of the influence of social media platforms on perceptions of TCSs could help 'bridge the doctor-patient gap' [15] and arguably, it offers one way to gain a greater understanding of people's experiences of living with the symptoms of TSWS: "[p]atients want professionals to recognise the impact of symptoms experienced and feel that recognition would be an important first step to better management" [18:2].…”

Section: Introductionmentioning

confidence: 99%

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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: Strengths and Limitationsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

show abstract

“…3 Between 2016 and 2021, there was a 274% increase in mentions of TCSW on social media platforms, indicating a growing societal awareness of this condition. 4 Limited high-quality clinical research has hindered the establishment of clear definitions and diagnostic criteria. 5 It has been reported that representative histological features commonly include thinned epidermis and numerous dilated vessels in the dermis, resulting in persistent and stubborn facial erythema, as well as skin barrier dysfunction, accompanied by symptoms such as burning, stinging, itching, and flushing.…”

Section: Introductionmentioning

confidence: 99%

Effective treatment of corticosteroid‐induced facial erythema using fractional radiofrequency microneedling

Huang,

Zheng,

Chen

et al. 2024

Lasers Surg Med

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ObjectivesTo investigate the efficacy of Fractional Radiofrequency Microneedling (FRM) in treating corticosteroid‐induced facial erythema.MethodsA retrospective study was conducted involving eight patients diagnosed as corticosteroid‐induced facial erythema. Each patient underwent a single session of FRM. Evaluative measures included Clinician's Erythema Assessment (CEA), Patient's Self‐Assessment (PSA), assessment of telangiectasia severity, procedure‐associated pain (10‐point scale), patient satisfaction (3‐point scale) and secondary outcomes.ResultsThe study found a 75% success rate and 100% effectiveness rate in alleviating erythema symptoms. CEA and PSA scores decreased by 67.7% and 78.1%, respectively. No cases of erythema rebound were recorded during the 3‐month follow‐up period.ConclusionsFRM demonstrated effectiveness and safety in treating facial erythema, offering promising advancement in dermatologic therapeutics.

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“…A recent study found an almost six times increase in discussion of #topicalsteroidwithdrawal on the social media platform Instagram between 2020 and 2016, with >618 354 mentions in a 12-month period. 4 Many sufferers believe that TCSs caused their problem and must be avoided at all costs. Patient support groups 5 are calling for earlier recognition, advocacy and research into TSWS.…”

mentioning

confidence: 99%