{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:47:43Z","timestamp":1782841663720,"version":"3.54.5"},"reference-count":40,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Topical steroid withdrawal (TSW) is a controversial skin condition among health care providers due to a lack of evidence, but it has an impactful and growing presence on social media. There are few previous reports of health care utilization for symptoms attributed to TSW.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n This study aims to investigate health care utilization and requests as well as information sources for TSW among patients with atopic dermatitis (AD).<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n This observational cross-sectional study used a questionnaire aimed at adults with AD, experiencing symptoms they attribute to TSW. The questionnaire was posted as a link, free to share with others, in a Swedish TSW\u2212themed Facebook group and remained accessible for 4 weeks. Descriptive statistics and topical text analysis on open-ended items were used to present and interpret the results.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n The participants (n=82) reported dermatologists (n=41, 50%), general practitioners (n=40, 49%), and practitioners of complementary and alternative medicine (CAM; n=32, 39%) as the most frequent health care contacts for TSW. However, among participants with ongoing symptoms attributed to TSW (n=68), ongoing health care contacts with general practitioners, dermatologists, and practitioners of CAM were reported by only 10% (n=7), 22% (n=15), and 13% (n=11), respectively. For symptoms attributed to AD, the frequencies of health care provider contacts were higher. Almost all participants had sought help from a general practitioner (n=81, 99%) or a dermatologist (n=76, 93%) at some point, and many had also consulted a practitioner of CAM (n=59, 72%). Among those with ongoing symptoms attributed to AD, 43% (n=26) had an ongoing contact with a dermatologist. Participant-requested help and support from health care providers included understanding and confirmation of TSW impairments (n=45, 56%), treatment of symptoms (n=26, 32%), and increased awareness and information about TSW from health care providers (n=21, 26%). The most common TSW information sources were Facebook (n=78, 96%), websites (n=75, 93%), and Instagram (n=45, 56%), but YouTube (n=11, 14%), podcasts (n=7, 10%), and TikTok (n=5, 6%) were also reported.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n This study investigates health care utilization patterns related to TSW. The results indicate that the participants received insufficient support from health care providers for symptoms they attributed to TSW. The participants initiated and maintained health care provider contacts for symptoms attributed to AD to a greater extent than for TSW and sought information and support for TSW elsewhere. Targeted interventions to overcome this could be educational efforts for general practitioners and dermatologists about the current scientific knowledge of TSW as well as the TSW discourse on social media. In addition, health care providers need to engage and contribute to evidence-based content about TSW on relevant social media platforms to prevent the spread of misinformation about topical glucocorticoids.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/85183","type":"journal-article","created":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T19:11:02Z","timestamp":1767208262000},"page":"e85183-e85183","source":"Crossref","is-referenced-by-count":2,"title":["Health Care Utilization in Patients With Atopic Dermatitis Experiencing Topical Steroid Withdrawal: Observational Cross-Sectional Social Media Questionnaire Study"],"prefix":"10.2196","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0700-7195","authenticated-orcid":false,"given":"Alexander","family":"Shayesteh","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9976-5702","authenticated-orcid":false,"given":"Maja","family":"af Klinteberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-9330-8592","authenticated-orcid":false,"given":"Sophie","family":"Vrang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8617-9037","authenticated-orcid":false,"given":"Gunnthorunn","family":"Sigurdardottir","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-7155-3613","authenticated-orcid":false,"given":"MariHelen","family":"Sandstr\u00f6m Falk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0523-7763","authenticated-orcid":false,"given":"Mikael","family":"Alsterholm","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2025,12,31]]},"reference":[{"issue":"3","key":"R1","doi-asserted-by":"publisher","first-page":"541","DOI":"10.1016\/j.jaad.2014.11.024","article-title":"A systematic review of topical corticosteroid withdrawal (\u201csteroid addiction\u201d) in patients with atopic dermatitis and other dermatoses","volume":"72","author":"Hajar","journal-title":"J Am Acad Dermatol"},{"issue":"3","key":"R2","doi-asserted-by":"publisher","first-page":"1293","DOI":"10.1080\/09546634.2021.1882659","article-title":"Topical corticosteroid withdrawal ('steroid addiction\u2019): an update of a systematic review","volume":"33","author":"Hwang","journal-title":"J Dermatolog Treat"},{"key":"R3","unstructured":"National Eczema SocietyBritish Dermatological Nursing Group. Topical steroid withdrawal. British Association of Dermatologists; 2024. URL: https:\/\/cdn.bad.org.uk\/uploads\/2024\/02\/22095550\/Topical-Steroid-Withdrawal-Joint-Statement.pdf [Accessed 05-03-2025]"},{"key":"R4","doi-asserted-by":"publisher","DOI":"10.2340\/actadv.v105.40187","article-title":"Topical steroid withdrawal in atopic dermatitis: patient-reported characterization from a Swedish social media questionnaire","volume":"105","author":"Alsterholm","journal-title":"Acta Derm Venereol"},{"issue":"9","key":"R5","doi-asserted-by":"publisher","first-page":"1007","DOI":"10.1093\/ced\/llad161","article-title":"Topical steroid withdrawal: an emerging clinical problem","volume":"48","author":"Brookes","journal-title":"Clin Exp Dermatol"},{"issue":"5","key":"R6","doi-asserted-by":"publisher","first-page":"316","DOI":"10.1097\/DER.0000000000000602","article-title":"Cessation of long-term topical steroids in adult atopic dermatitis: a prospective cohort study","volume":"31","author":"Sheary","journal-title":"Dermatitis"},{"issue":"5","key":"R7","doi-asserted-by":"publisher","first-page":"780","DOI":"10.1111\/bjd.21770","article-title":"Topical steroid withdrawal syndrome: time to bridge the gap","volume":"187","author":"Cotter","journal-title":"Br J Dermatol"},{"issue":"2","key":"R8","doi-asserted-by":"publisher","first-page":"112","DOI":"10.1093\/ced\/llac019","article-title":"#corticophobia: a review on online misinformation related to topical steroids","volume":"48","author":"Finnegan","journal-title":"Clin Exp Dermatol"},{"issue":"3","key":"R9","doi-asserted-by":"publisher","first-page":"479","DOI":"10.1111\/pde.15269","article-title":"Steroid phobia on social media platforms","volume":"40","author":"Nickles","journal-title":"Pediatr Dermatol"},{"issue":"7","key":"R10","doi-asserted-by":"publisher","first-page":"e433","DOI":"10.1111\/ajd.14580","article-title":"Topical steroid withdrawal: a perspective of Australian dermatologists","volume":"66","author":"Awad","journal-title":"Australas J Dermatol"},{"issue":"1","key":"R11","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1016\/j.anai.2022.09.005","article-title":"Topical steroid withdrawal syndrome: should we worry?","volume":"130","author":"Spergel","journal-title":"Ann Allergy Asthma Immunol"},{"key":"R12","doi-asserted-by":"publisher","DOI":"10.2340\/actadv.v105.44209","article-title":"Topical steroid withdrawal: perspectives of Dutch healthcare professionals","volume":"105","author":"Vroman","journal-title":"Acta Derm Venereol"},{"key":"R13","doi-asserted-by":"publisher","DOI":"10.1177\/17103568251388635","article-title":"Initial consensus for the management of topical steroid withdrawal: a Delphi study","author":"Zemlok","journal-title":"Dermatitis"},{"issue":"8","key":"R14","doi-asserted-by":"publisher","first-page":"1953","DOI":"10.1016\/j.jid.2024.11.026","article-title":"Topical steroid withdrawal is a targetable excess of mitochondrial NAD","volume":"145","author":"Shobnam","journal-title":"J Invest Dermatol"},{"issue":"12","key":"R15","doi-asserted-by":"publisher","first-page":"3224","DOI":"10.1016\/j.jid.2025.05.026","article-title":"Molecular and cellular mechanisms leading to topical steroid withdrawal syndrome remain unexplained and warrant further research","volume":"145","author":"Brown","journal-title":"J Invest Dermatol"},{"issue":"4","key":"R16","doi-asserted-by":"publisher","first-page":"213","DOI":"10.1097\/DER.0000000000000387","article-title":"Steroid withdrawal effects following long-term topical corticosteroid use","volume":"29","author":"Sheary","journal-title":"Dermatitis"},{"issue":"6","key":"R17","doi-asserted-by":"publisher","first-page":"e131","DOI":"10.1097\/DER.0000000000000720","article-title":"A qualitative study exploring the views and experiences of adults who decided to cease long-term topical steroid use","volume":"32","author":"Sheary","journal-title":"Dermatitis"},{"issue":"3","key":"R18","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2022-060867","article-title":"Qualitative analysis of topical corticosteroid concerns, topical steroid addiction and withdrawal in dermatological patients","volume":"12","author":"Tan","journal-title":"BMJ Open"},{"issue":"8","key":"R19","doi-asserted-by":"publisher","first-page":"1554","DOI":"10.1111\/ced.15194","article-title":"Topical steroid withdrawal through the lens of social media","volume":"47","author":"Bowe","journal-title":"Clin Exp Dermatol"},{"key":"R20","doi-asserted-by":"publisher","DOI":"10.2196\/57687","article-title":"Reviewing the evidence base for topical steroid withdrawal syndrome in the research literature and social media platforms: an evidence gap map","volume":"26","author":"Orr","journal-title":"J Med Internet Res"},{"key":"R21","doi-asserted-by":"publisher","DOI":"10.2196\/48389","article-title":"Investigating topical steroid withdrawal videos on TikTok: cross-sectional analysis of the top 100 videos","volume":"8","author":"Haddad","journal-title":"JMIR Form Res"},{"issue":"8","key":"R22","doi-asserted-by":"publisher","first-page":"1545","DOI":"10.1111\/ced.14679","article-title":"Scratching the surface: a review of online misinformation and conspiracy theories in atopic dermatitis","volume":"46","author":"O\u2019Connor","journal-title":"Clin Exp Dermatol"},{"issue":"3","key":"R23","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.6.3.e34","article-title":"Improving the quality of Web surveys: the Checklist for Reporting Results of Internet E-Surveys (CHERRIES)","volume":"6","author":"Eysenbach","journal-title":"J Med Internet Res"},{"issue":"8","key":"R24","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.7071","article-title":"The use of Facebook in recruiting participants for health research purposes: a systematic review","volume":"19","author":"Whitaker","journal-title":"J Med Internet Res"},{"key":"R25","doi-asserted-by":"crossref","unstructured":"Ferrario B Stantcheva S . Eliciting people\u2019s first-order concerns: text analysis of open-ended survey questions. In: AEA Papers and Proceedings. Vol 112. American Economic Association; 2022:163-169. [doi: 10.1257\/pandp.20221071]","DOI":"10.1257\/pandp.20221071"},{"key":"R26","unstructured":"Act (2003:460) on ethical review of research involving humans [Web page in Swedish]. lagen.nu. URL: https:\/\/lagen.nu\/2003:460 [Accessed 16-12-2025]"},{"key":"R27","unstructured":"ITSAN. URL: https:\/\/www.itsan.org [Accessed 05-03-2025]"},{"key":"R28","doi-asserted-by":"publisher","DOI":"10.2340\/actadv.v105.43455","article-title":"Topical steroid withdrawal: the challenging transition from patient self-diagnosis on social media to medical science and care","volume":"105","author":"Taieb","journal-title":"Acta Derm Venereol"},{"issue":"4","key":"R29","doi-asserted-by":"publisher","first-page":"423","DOI":"10.1016\/j.anai.2023.12.022","article-title":"Topical steroid withdrawal and atopic dermatitis","volume":"132","author":"Marshall","journal-title":"Ann Allergy Asthma Immunol"},{"issue":"10247","key":"R30","doi-asserted-by":"publisher","first-page":"345","DOI":"10.1016\/S0140-6736(20)31286-1","article-title":"Atopic dermatitis","volume":"396","author":"Langan","journal-title":"Lancet"},{"issue":"3","key":"R31","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1080\/02813432.2025.2466180","article-title":"Use of complementary and alternative medicine (CAM) in Sweden: a cross-sectional survey","volume":"43","author":"Danell","journal-title":"Scand J Prim Health Care"},{"issue":"5","key":"R32","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1159\/000464442","article-title":"Two-thirds of survey respondents in southern Sweden used complementary or alternative medicine in 2015","volume":"24","author":"Wemrell","journal-title":"Complement Med Res"},{"issue":"4","key":"R33","doi-asserted-by":"publisher","first-page":"488","DOI":"10.1016\/j.ijwd.2021.04.006","article-title":"Dermatology on TikTok: analysis of content and creators","volume":"7","author":"Nguyen","journal-title":"Int J Womens Dermatol"},{"issue":"1","key":"R34","doi-asserted-by":"publisher","first-page":"273","DOI":"10.1016\/j.jaad.2020.12.028","article-title":"Overview of TikTok\u2019s most viewed dermatologic content and assessment of its reliability","volume":"85","author":"Villa-Ruiz","journal-title":"J Am Acad Dermatol"},{"issue":"1","key":"R35","doi-asserted-by":"publisher","first-page":"e25","DOI":"10.1016\/j.jaad.2021.02.050","article-title":"TikTok and dermatology: an opportunity for public health engagement","volume":"85","author":"Zheng","journal-title":"J Am Acad Dermatol"},{"issue":"1","key":"R36","doi-asserted-by":"publisher","first-page":"47","DOI":"10.1080\/1364557032000081663","article-title":"Snowball sampling: using social networks to research non\u2010heterosexual women","volume":"8","author":"Browne","journal-title":"Int J Soc Res Methodol"},{"issue":"8","key":"R37","doi-asserted-by":"publisher","DOI":"10.2196\/38015","article-title":"Social media use for research participant recruitment: integrative literature review","volume":"24","author":"Darko","journal-title":"J Med Internet Res"},{"issue":"6","key":"R38","doi-asserted-by":"publisher","first-page":"551","DOI":"10.2340\/00015555-3144","article-title":"Topical steroid withdrawal: a case series of 10 children","volume":"99","author":"Sheary","journal-title":"Acta Derm Venereol"},{"key":"R39","doi-asserted-by":"publisher","DOI":"10.1177\/2050313X231164268","article-title":"Topical steroid withdrawal syndrome in a mother and son: a case report","volume":"11","author":"Feschuk","journal-title":"SAGE Open Med Case Rep"},{"issue":"4","key":"R40","doi-asserted-by":"publisher","first-page":"281","DOI":"10.1093\/skinhd\/vzaf051","article-title":"Topical steroid withdrawal: self-diagnosis, unconscious bias and social media","volume":"5","author":"Guckian","journal-title":"Skin Health Dis"}],"container-title":["JMIR Formative Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/formative.jmir.org\/2025\/1\/e85183","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:13:36Z","timestamp":1782839616000},"score":1,"resource":{"primary":{"URL":"https:\/\/formative.jmir.org\/2025\/1\/e85183"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12,31]]},"references-count":40,"URL":"https:\/\/doi.org\/10.2196\/85183","relation":{},"ISSN":["2561-326X"],"issn-type":[{"value":"2561-326X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12,31]]},"article-number":"v9i3e85183"}}