Background: Survivors of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are living with many different long-term sequelae with some clinicians referring to the importance of appreciating the chronic phase of SJSTEN. Consequently, it is important to examine the health-related quality-of-life (HRQoL) impacts on patients' lives to enhance health care practitioners' understanding of the long-term implications on this group of patients.
Objectives: To synthesise the evidence related to the impact of SJS/TEN on the health-related quality of life (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, Cochrane Library, Lenus, MedNar, PROSPERO, Portail epidemiologie, HAL-OAR, DUMAS, RIAN and Lenus. There was no search limits set on languages or years. The end date of the search was November 2024. The initial search yielded a total of 6,154 articles. Data extraction was performed for the final 26 included studies and synthesised following the JBI methodology for mixed methods systematic reviews, employing a convergent integrated approach.
Results: Arising from the data synthesis process three themes were constructed, 1. SJS/TEN physical sequelae and impact on QoL experiences, 2. SJS/TEN psychological sequelae and impact on QoL experiences, and 3. sociological impacts of SJS/TEN on QoL experiences.
Conclusions: The findings from the review will help inform clinicians in considering the long term HRQoL effects on patients/survivors when planning both acute and post discharge care. This systematic review informed, in part, the development of a bespoke QoL outcome measure namely QoLTEN. This is currently under pilot evaluation.
© The Author(s) 2025. Published by Oxford University Press on behalf of British Association of Dermatologists.