Survival after Stevens-Johnson Syndrome or Toxic Epidermal Necrolysis: A UK-based Cohort Study

We performed a retrospective observational study to evaluate mortality after Stevens-Johnson syndrome / toxic epidermal necrolysis (SJS/TEN). In a cross-sectional study of 434 patients hospitalized with SJS/TEN in England between 1995 and 2013 (Hospital Episode Statistics Admitted Patient Care Data), 7.4% died during the index hospitalization (5.0% of patients with SJS and 23.2% with TEN). In a second analysis, we followed a validated cohort of 477 SJS/TEN patients from the UK-based Clinical Practice Research Datalink and 1908 matched comparator patients (1995-2013) over 5 years until death or until another censoring reason occurred. In total, 23 (4.8%) of SJS/TEN patients died within 90 days after the first recorded diagnosis and 36 (7.6%) died between day 91 and the end of follow-up. We observed a HR for death of 4.86 (95% CI 2.65-8.91) during the first 90 days after SJS/TEN, which attenuated to a HR of 0.80 (95% CI 0.55-1.16) between day 91 and the end of follow up. Results were not meaningfully different within sub-groups of sex, age and body mass index. In summary, 7.4% of patients hospitalized with SJS/TEN died during the index hospitalization. Long-term mortality up to five years was not increased compared to patients without SJS/TEN.