Impact of Stevens–Johnson 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

Background People who have survived Stevens–Johnson 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’ lives, to enhance healthcare practitioners’ understanding of the long-term implications for this group of patients. Objectives To synthesize the evidence related to the impact of SJS/TEN on the HRQoL experiences of adults with SJS/TEN. Methods 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 Epidémiologie 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. Results 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. Conclusions 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.