{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,14]],"date-time":"2025-10-14T18:11:07Z","timestamp":1760465467548,"version":"build-2065373602"},"reference-count":51,"publisher":"Public Library of Science (PLoS)","issue":"10","license":[{"start":{"date-parts":[[2025,10,14]],"date-time":"2025-10-14T00:00:00Z","timestamp":1760400000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"federal joint committee of the joint self-government of physicians, dentists, hospitals, and health insurance funds in Germany","award":["01VSF21002"],"award-info":[{"award-number":["01VSF21002"]}]},{"name":"federal joint committee of the joint self-government of physicians, dentists, hospitals, and health insurance funds in Germany","award":["01VSF21002"],"award-info":[{"award-number":["01VSF21002"]}]},{"name":"federal joint committee of the joint self-government of physicians, dentists, hospitals, and health insurance funds in Germany","award":["01VSF21002"],"award-info":[{"award-number":["01VSF21002"]}]},{"name":"federal joint committee of the joint self-government of physicians, dentists, hospitals, and health insurance funds in Germany","award":["01VSF21002"],"award-info":[{"award-number":["01VSF21002"]}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"\nBackground<\/jats:title>\nIn response to considerable heterogeneity in German healthcare for patients with epidermal necrolysis (EN; also Stevens-Johnson syndrome\/ toxic epidermal necrolysis), a national guideline was developed. However, no patient initiatives were identified to represent patient preferences, which have yet to be systematically evaluated in Germany.<\/jats:p>\n<\/jats:sec>\n\nObjective<\/jats:title>\nWe conducted a qualitative study on EN survivors\u2019 experiences to collect contextualised data on patient preferences and identify potential shortcomings and untapped potentials in routine care.<\/jats:p>\n<\/jats:sec>\n\nMethods<\/jats:title>\nWe contacted 14 participants who were either survivors of EN or family members of survivors. After recruitment and obtaining informed consent, we conducted individual and dyadic interviews using a semi-structured guide developed in a preceding focus group with the same patient collective. Following grounded theory principles, recruitment was contingent on emerging themes. In our analysis, we coded interview data into thematic categories of increasing abstraction, resulting in a conceptual framework accounting for universal features of the illness experience.<\/jats:p>\n<\/jats:sec>\n\nResults<\/jats:title>\nFrom survivors\u2019 perspectives, EN represents a profound transgression or destabilisation of personal and interpersonal boundaries, affecting several fundamental areas of human experience. Even after returning to domestic life, survivors report physical limitations that, despite their perceived invisibility to their social environment, lead to permanent changes in self-concept and personal values. Conversely, the majority of participants emphasised restoring lost boundaries in leading an authentic and meaningful life and counteracting social alienation. The study identifies five key dimensions of boundary violations caused by EN and four areas where healthcare providers can help restore boundaries to facilitate successful coping.<\/jats:p>\n<\/jats:sec>\n\nConclusion<\/jats:title>\nHealthcare providers should be mindful of life-altering implications of EN and how debilitating illness sequelae can affect survivors beyond a transient emergency. Optimal medical care should facilitate stabilising lost boundaries over the entire recovery period and requires a sensitivity to existential aspects of the disease only accessible through a sustained dialog with patients and family members.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0333636","type":"journal-article","created":{"date-parts":[[2025,10,14]],"date-time":"2025-10-14T17:28:38Z","timestamp":1760462918000},"page":"e0333636","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Epidermal necrolysis (Stevens-Johnson syndrome\/ toxic epidermal necrolysis) as extensive boundary violation: A qualitative study on the illness experience and care needs of survivors in the context of the first German guideline"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0207-7373","authenticated-orcid":true,"given":"Ruben","family":"Heuer","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maren","family":"Paulmann","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maja","family":"Mockenhaupt","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexander","family":"Nast","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2025,10,14]]},"reference":[{"issue":"5","key":"pone.0333636.ref001","doi-asserted-by":"crossref","DOI":"10.2340\/00015555-3408","article-title":"Bullous Drug Reactions","volume":"100","author":"M Mockenhaupt","year":"2020","journal-title":"Acta Derm Venereol"},{"issue":"6","key":"pone.0333636.ref002","doi-asserted-by":"crossref","DOI":"10.1016\/j.bjps.2016.01.034","article-title":"UK guidelines for the management of Stevens-Johnson syndrome\/toxic epidermal necrolysis in adults 2016","volume":"69","author":"D Creamer","year":"2016","journal-title":"J Plast Reconstr Aesthet Surg"},{"issue":"1","key":"pone.0333636.ref003","doi-asserted-by":"crossref","first-page":"147","DOI":"10.1007\/s12016-017-8654-z","article-title":"Current Perspectives on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis","volume":"54","author":"M Lerch","year":"2018","journal-title":"Clin Rev Allergy Immunol"},{"issue":"6","key":"pone.0333636.ref004","doi-asserted-by":"crossref","first-page":"712","DOI":"10.1001\/jamadermatol.2021.1136","article-title":"Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome\/Toxic Epidermal Necrolysis","volume":"157","author":"M Hoffman","year":"2021","journal-title":"JAMA Dermatol"},{"issue":"3","key":"pone.0333636.ref005","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1007\/s40264-017-0608-0","article-title":"Severe Physical Complications among Survivors of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis","volume":"41","author":"C Olteanu","year":"2018","journal-title":"Drug Saf"},{"issue":"4","key":"pone.0333636.ref006","doi-asserted-by":"crossref","first-page":"924","DOI":"10.1111\/bjd.15360","article-title":"Long-term complications of Stevens-Johnson syndrome\/toxic epidermal necrolysis (SJS\/TEN): the spectrum of chronic problems in patients who survive an episode of SJS\/TEN necessitates multidisciplinary follow-up","volume":"177","author":"HY Lee","year":"2017","journal-title":"Br J Dermatol"},{"issue":"4","key":"pone.0333636.ref007","doi-asserted-by":"crossref","first-page":"916","DOI":"10.1111\/bjd.18387","article-title":"Health-related quality of life and long-term sequelae in survivors of epidermal necrolysis: an observational study of 57 patients","volume":"182","author":"S Ingen-Housz-Oro","year":"2020","journal-title":"Br J Dermatol"},{"issue":"1","key":"pone.0333636.ref008","doi-asserted-by":"crossref","first-page":"188","DOI":"10.1111\/jdv.16891","article-title":"Chronic pain: a long-term sequela of epidermal necrolysis (Stevens-Johnson syndrome\/toxic epidermal necrolysis) - prevalence, clinical characteristics and risk factors","volume":"35","author":"J-P Lefaucheur","year":"2021","journal-title":"J Eur Acad Dermatol Venereol"},{"issue":"10","key":"pone.0333636.ref009","doi-asserted-by":"crossref","first-page":"979","DOI":"10.1111\/1346-8138.16487","article-title":"Stevens-Johnson syndrome and toxic epidermal necrolysis associated with increased risk of developing psychiatric disorders: A retrospective population-based cohort study in Taiwan","volume":"49","author":"C-P Chiang","year":"2022","journal-title":"J Dermatol"},{"key":"pone.0333636.ref010","author":"E Zitha","year":"2016"},{"issue":"5","key":"pone.0333636.ref011","doi-asserted-by":"crossref","first-page":"1206","DOI":"10.1111\/bjd.17267","article-title":"Post-traumatic stress disorder in Stevens-Johnson syndrome and toxic epidermal necrolysis: prevalence and risk factors. 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