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
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.003 | 0.006 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.012 | 0.002 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".