Severe Physical Complications among Survivors of Stevens–Johnson Syndrome and Toxic Epidermal Necrolysis

Introduction Few studies have reported the physical complications among Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) survivors. Objective The aim of this study was to comprehensively characterize the physical complications among SJS/TEN survivors and to learn about patients’ perspectives of surviving SJS/TEN. Methods SJS/TEN survivors older than 18 years of age were assessed by different methods: a medical interview; a questionnaire assessing patients’ perspectives; thorough skin, oral mucous membrane, and ophthalmic examinations; and a retrospective assessment of medical records. Results Our cohort consisted of 17 patients with a mean time of 51.6 ± 74.7 months (median 9, range 1–228) following SJS/TEN. The most common physical complications identified in the medical examination were post-inflammatory skin changes (77%), cutaneous scars (46%), dry eyes (44%), symblepharon, and chronic ocular surface inflammation (33% each). Novel physical sequelae included chronic fatigue (76%) and pruritus (53%). We also found a novel association between the number of mucous membranes affected in the acute phase of SJS/TEN and hair loss during the 6 months following hospital discharge; hair loss was reported in 88% of the group of patients who had three or more mucous membranes affected versus 29% of patients who had less than three mucous membranes involved ( p = 0.0406). Following hospital discharge due to SJS/TEN, 59% of patients were followed by a dermatologist, although 88% had dermatological complications; 6% were followed by an ophthalmologist, even though 67% had ophthalmological complications; and 6% of female survivors were followed by a gynecologist, even though 27% had gynecological complications. Conclusion Survivors of SJS/TEN suffer from severe physical complications impacting their health and lives that are mostly under recognized and not sufficiently treated by medical professionals.