{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,22]],"date-time":"2026-06-22T23:14:29Z","timestamp":1782170069257,"version":"3.54.5"},"reference-count":29,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2024,8,20]],"date-time":"2024-08-20T00:00:00Z","timestamp":1724112000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100010414","name":"Health Research Board, Ireland","doi-asserted-by":"publisher","award":["ILP-POR-2022-009"],"award-info":[{"award-number":["ILP-POR-2022-009"]}],"id":[{"id":"10.13039\/100010414","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,12,23]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Much has been documented about the physical sequelae of Stevens\u2013Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). While less documented, it is recognized that patients can have long-lasting psychological sequelae. There is a lack of qualitative research on the quality of life (QoL) experiences of adults who have been diagnosed with SJS\/TEN.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>To explore the experiences of adults who had SJS\/TEN and how these experiences relate to their QoL.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Using an interpretative descriptive qualitative study, a purposive sample of 18 adults with SJS\/TEN were interviewed using in-depth semi-structured interviews. Data were analysed using content analysis.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Two themes were constructed, each with two categories. Theme 1 (Psychosocial Impacts) included the categories \u2018The self and others\u2019 and \u2018A changed perspective on life\u2019. Theme 2 (Chronicity of Sequelae) comprised the categories \u2018Multi-organ involvement\u2019 and \u2018Further consequences of TEN\u2019.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Findings highlighted that SJS\/TEN had a significant impact on the different QoL experiences of participants including psychological, physical, social, educational and occupational. Many expressed challenges they faced following discharge from hospital, including gaps in psychological care, navigating disjointed care pathways and lack of coordinated care. If SJS\/TEN is viewed as a chronic condition, it is important that researchers and clinicians study the long-term effects of SJS\/TEN on people\u2019s lives to aid in developing a plan of care to enhance the QoL for this cohort. Psychological and QoL assessments following discharge from hospital require consideration.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljae334","type":"journal-article","created":{"date-parts":[[2024,8,20]],"date-time":"2024-08-20T09:55:49Z","timestamp":1724147749000},"page":"85-91","source":"Crossref","is-referenced-by-count":13,"title":["The quality-of-life impact of Stevens\u2013Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients\u2019 lives: an interpretative descriptive qualitative study"],"prefix":"10.1093","volume":"192","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4956-4670","authenticated-orcid":false,"given":"Pauline","family":"O\u2019Reilly","sequence":"first","affiliation":[{"name":"Department of Nursing and Midwifery, University of Limerick , Limerick ,","place":["Ireland"]},{"name":"Health Research Institute, University of Limerick , Limerick ,","place":["Ireland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8279-0506","authenticated-orcid":false,"given":"Sarah","family":"Walsh","sequence":"additional","affiliation":[{"name":"Dermatology Department, King\u2019s College Hospital , London ,","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher B","family":"Bunker","sequence":"additional","affiliation":[{"name":"Department of Dermatology, University College London Hospitals NHS Foundation Trust , London ,","place":["UK"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sheila","family":"Ryan","sequence":"additional","affiliation":[{"name":"Department of Nursing and Midwifery, University of Limerick , Limerick ,","place":["Ireland"]},{"name":"Charles Centre for Dermatology, University Hospital Limerick, ULHG , Limerick ,","place":["Ireland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pierre-Andr\u00e9","family":"Natella","sequence":"additional","affiliation":[{"name":"Clinical Research Unit, Henri Mondor Hospital , Cr\u00e9teil ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"Colin","sequence":"additional","affiliation":[{"name":"Univ Paris Est Cr\u00e9teil EpiDermE , Cr\u00e9teil ,","place":["France"]},{"name":"Dermatology Department, AP-HP, Henri Mondor Hospital , Cr\u00e9teil ,","place":["France"]},{"name":"Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions , TOXIBUL, Cr\u00e9teil ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline","family":"Simpson","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Chelsea and Westminster Hospital NHS Foundation Trust , London 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