{"doi":"10.1093/bjd/ljac067","title":"Topical corticosteroid withdrawal syndrome: the patient community call for high-quality research, clear definitions and diagnostic criteria","abstract":"Topical corticosteroids (TCS) are a long-established treatment for eczema (syn. atopic eczema, atopic dermatitis). Research evidence and learning from widespread clinical use suggest they have good efficacy for most people with eczema and are generally safe when used appropriately. However, the quality of evidence for safety of application over multiple years, which many patients require, is generally low.1 Topical corticosteroid withdrawal syndrome (TSWS), sometimes called ‘steroid addiction’, is of increasing interest to the eczema community. The period from 2016 to 2021 saw a 274% increase in mentions of TSWS on social media platforms.2 It is challenging to provide a clear description of TSWS as the concept is currently ill-defined, but a UK drug safety update has recognized distinct withdrawal reactions if higher-potency TCS are stopped after prolonged or continual use, noting erythroderma/redness and burning worse than the original condition.3 A systematic review of evidence outlined clinical characteristics of TSWS and found it is most common in adult females, predominantly with the use of moderate- or high-potency steroids.4 However, the quality of available evidence was low, and there is a lack of shared understanding among patients and clinicians about what constitutes TSWS. It can be challenging for patients and clinicians to distinguish TSWS symptoms from eczema that has not been adequately treated by the TCS, as uncontrolled eczema and TSWS share similar characteristics (e.g. inflamed skin). Cotter et al. called for research to better understand the nature of TSWS.5 We support this call to action and herein add the voice of patients living with symptoms self-reported as TSWS. Concerns from the patient community need to be fully understood and addressed. As part of a broader programme of eczema research, the Centre of Evidence Based Dermatology, University of Nottingham hosted an online stakeholder workshop focused on TSWS. Attendees shared experiences and key concerns, pointed to areas where evidence is missing, and highlighted the potential impact of research on healthcare for TSWS. The workshop allowed exchange of ideas and relationship building, and has resulted in an ongoing dialogue between researchers, patients and patient organizations collaborating to develop this research area. We have five take-home messages for the clinical and research community: 1High-quality research is needed. Figure 1 outlines key areas of research that need attention. These are the building blocks that will form an evidence base to inform practice. They can be somewhat interrelated and may need to involve patients with different conditions using TCS and span across health specialties. Building blocks for high-quality research into topical corticosteroid withdrawal syndrome (TSWS). TCS, topical corticosteroids. 2Clear definitions and diagnosis criteria are a priority. It is currently unclear how many people are living with TSWS, how well healthcare professionals are effectively diagnosing and treating the condition, and whether all reports of TSWS have the same aetiology and require the same treatment. TSWS may currently be a term that is used to cover several different conditions with different causes rather than one over-arching condition. 3Prevention will require understanding of the complex conditions that result in TSWS. Patients feel blamed for their condition when it is classed as due to ‘inappropriate use’. We must recognize the complex factors that contribute to long-term continuous use, and the need for better education and support from healthcare professionals for patients using TCS in the long term. Prevention of TSWS symptoms is a key goal for the research agenda. 4Research can raise awareness and acceptance of TSWS within the medical community. An absence of research in the past is likely to have contributed to patients feeling unsupported when reporting TSWS. Patients want professionals to recognize the impact of symp","journal":"British Journal of Dermatology","year":2022,"id":277423,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":8,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9601,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2022-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":949511,"name":"Holly Broome","orcid":null,"position":1,"is_corresponding":false},{"id":949005,"name":"Alice Burleigh","orcid":"0000-0002-0782-2715","position":2,"is_corresponding":false},{"id":949512,"name":"Harriet Hammond","orcid":null,"position":3,"is_corresponding":false},{"id":949006,"name":"Farhan Ismail","orcid":"0000-0003-2294-2077","position":4,"is_corresponding":false},{"id":949007,"name":"Andrew Proctor","orcid":"0000-0002-5171-7576","position":5,"is_corresponding":false},{"id":949008,"name":"Amanda Roberts","orcid":"0000-0003-0370-3695","position":6,"is_corresponding":false},{"id":799838,"name":"Kim S Thomas","orcid":"0000-0001-7785-7465","position":7,"is_corresponding":false},{"id":949009,"name":"Paul Leighton","orcid":"0000-0001-5208-0274","position":8,"is_corresponding":false},{"id":844428,"name":"Laura Howells","orcid":"0000-0003-4157-7394","position":0,"is_corresponding":true}],"reference_count":5,"raw_metadata":null,"created_at":"2026-07-19T00:28:39.226969Z","pmid":"36763872","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}