Physical and Psychological Recovery Following Toxic Epidermal Necrolysis: A Patient Survey

Abstract

Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are acute, life-threatening diseases that cause sloughing of the skin and mucous membranes. Despite improved survival rates, few studies focus on long-term outcomes. We conducted a single-center review of all patients with SJS/TEN admitted from January 2008-2014. SJS/TEN survivors were invited to participate in the validated Veterans RAND 12 Item Health Survey (VR-12) to assess health related quality of life using a mental health composite score (MCS) and physical health component score (PCS). The sample was compared to US norms using one sample two tailed t-tests. A second questionnaire addressed potential long-term medical complications related to SJS/TEN. Of 81 treated subjects, 24 (30%) long-term survivors responded. Participants identified cutaneous sequelae most frequently (79%), followed by nail problems (70%), oral (62%) and ocular (58%) sequalae. Thirty-eight percent rated their quality of life to be “unchanged” to “much better” since their episode of SJS/TEN. The average PCS score was lower than US population norms (mean: 36 vs. 50, p=0.006), indicating persistent physical sequelae from SJS/TEN. These results suggest that SJS/TEN survivors continue to suffer from long-term complications that impair their quality of life and warrant ongoing follow-up by a multidisciplinary care team.

Toxic Epidermal Necrolysis, A Serious Side Effect of Tenoxicam Use: A Case Report

“…All these factors contribute to an impaired quality of life. For patients with conjunctival involvement, long-term complications are dry eye syndrome, photophobia, ectropion, corneal abrasions or ulcers, lid adhesions, and the loss of visual acuity [63,92]. As for patients with vulvovaginal involvement, the main reported complications are synechiae formation and vaginal stenosis, requiring surgery [63,93].…”