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

Katherine L. Deniro, Shari Honari, Dan S. Hippe, Andrea Dai, Tam N. Pham, Maria Caceres, Samuel P. Mandell, Phi Q. Duong, Kara A. McMullen, Nicole S. Gibran

Research output: Contribution to journalArticlepeer-review


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 to 2014. SJS/TEN survivors were invited to participate in the validated Veterans RAND 12-Item Health Survey (VR-12) to assess healthrelated quality of life using a mental health composite score and physical health component score (PCS). The sample was compared to U.S. norms using one-sample two-tailed t tests. A second questionnaire addressed potential longterm 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 was lower than U.S. population norms (mean: 36 vs 50, P = .006), indicating persistent physical sequelae from SJS/TEN. These results suggest that SJS/TEN survivors continue to suffer from longterm complications that impair their quality of life and warrant ongoing follow-up by a multidisciplinary care team.

Original languageEnglish (US)
Pages (from-to)1227-1231
Number of pages5
JournalJournal of Burn Care and Research
Issue number6
StatePublished - Nov 1 2021
Externally publishedYes

ASJC Scopus subject areas

  • Surgery
  • Emergency Medicine
  • Rehabilitation


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