{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T02:44:27Z","timestamp":1793241867872,"version":"4.5.0"},"reference-count":58,"publisher":"Oxford University Press (OUP)","issue":"4","license":[{"start":{"date-parts":[[2025,6,21]],"date-time":"2025-06-21T00:00:00Z","timestamp":1750464000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100001590","name":"Health Research Board","doi-asserted-by":"publisher","award":["ILP-POR-2022-009"],"award-info":[{"award-number":["ILP-POR-2022-009"]}],"id":[{"id":"10.13039\/501100001590","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,9,18]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>People who have survived Stevens\u2013Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) live with many different long-term sequelae, with some clinicians referring to the importance of appreciating the chronic phase of SJS\/TEN. Consequently, it is important to examine the health-related quality of life (HRQoL) impacts on patients\u2019 lives, to enhance healthcare practitioners\u2019 understanding of the long-term implications for this group of patients.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>To synthesize the evidence related to the impact of SJS\/TEN on the HRQoL experiences of adults with SJS\/TEN.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>This review was guided by the Joanna Briggs Institute (JBI) approach to mixed-methods systematic reviews. Fifteen international databases were searched, including CINAHL Complete, MEDLINE (Ovid), MEDLINE (EBSCO), Embase, PsycINFO, Scopus, the Cochrane Library, Lenus, MedNar, PROSPERO, Portail Epid\u00e9miologie France, HAL-OAR, DUMAS, RIAN.ie and Lenus. No search limits were set on languages or year of publication. The end date of the search was November 2024. The initial search yielded a total of 6154 articles. Data extraction was performed for the final 26 included studies and synthesized following the JBI methodology for mixed-methods systematic reviews, using a convergent integrated approach.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Arising from the data synthesis process, three themes were constructed: (i) SJS\/TEN physical sequelae and impact on quality of life (QoL) experiences; (ii) SJS\/TEN psychological sequelae and impact on QoL experiences; and (iii) sociological impacts of SJS\/TEN on QoL experiences.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>The findings will help clinicians consider the long-term effects of SJS\/TEN on HRQoL in patients\/those who have survived when planning acute and postdischarge care. This systematic review informed, in part, the development of a bespoke QoL outcome measure, namely QoLTEN. This is under pilot evaluation.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljaf229","type":"journal-article","created":{"date-parts":[[2025,6,27]],"date-time":"2025-06-27T22:13:47Z","timestamp":1751062427000},"page":"662-669","source":"Crossref","is-referenced-by-count":5,"title":["Impact of Stevens\u2013Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on the health-related quality of life (HRQoL) experiences of adults with SJS\/TEN: a mixed-methods systematic review"],"prefix":"10.1093","volume":"193","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4956-4670","authenticated-orcid":false,"given":"Pauline","family":"O\u2019Reilly","sequence":"first","affiliation":[{"name":"School 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"}]},{"given":"Rajamanikandan","family":"Savarimalai","sequence":"additional","affiliation":[{"name":"School 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":"Louise A","family":"Barry","sequence":"additional","affiliation":[{"name":"School 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"}]},{"given":"Donal\u00a0G","family":"Fortune","sequence":"additional","affiliation":[{"name":"Health Research Institute, University of Limerick , Limerick ,","place":["Ireland"]},{"name":"Department of Psychology, University of Limerick , Limerick ,","place":["Ireland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chris 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":"School 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":"Roni","family":"Dodiuk-Gad","sequence":"additional","affiliation":[{"name":"Dermatology Department, Emek Medical Center, Bruce Rappaport Faculty of Medicine, Technion , Haifa ,","place":["Israel"]},{"name":"Division of Dermatology and Department of Medicine, University of Toronto , Toronto, ON ,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice","family":"Coffey","sequence":"additional","affiliation":[{"name":"School of Nursing and Midwifery, University of Limerick , Limerick ,","place":["Ireland"]},{"name":"Health Research Institute, University of Limerick , Limerick ,","place":["Ireland"]},{"name":"Centre for Implementation Research, University of Limerick , Limerick ,","place":["Ireland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5383-7096","authenticated-orcid":false,"given":"Saskia","family":"Ingen-Housz-Oro","sequence":"additional","affiliation":[{"name":"Clinical Research Unit, Henri Mondor Hospital , 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"]},{"name":"Universit\u00e9 Paris Est Cr\u00e9teil EpiDermE , Cr\u00e9teil ,","place":["France"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5640-7123","authenticated-orcid":false,"given":"Laoise","family":"Griffin","sequence":"additional","affiliation":[{"name":"Charles Centre for Dermatology, University Hospital Limerick, ULHG , Limerick 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