Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis

Melissa Hoffman, Peter B. Chansky, Arjun R. Bashyam, Michelle A. Boettler, Nayanika Challa, Arturo Dominguez, Blanca Estupinan, Rachit Gupta, Kerry Hennessy, Shawna Nicole Huckell, Sara Hylwa-Deufel, Nicole A. Karikari, Jesse J. Keller, Daniela Kroshinsky, Sara A. Kullberg, Eden Lake, Karen J. Lee, Edgar Martinez, Kathryn Michels, Arash MostaghimiWilliam Murphy, Fnu Nutan, Montana Osler, Vartan Pahalyants, Tejesh Patel, Lucia Seminario-Vidal, Lindsay C. Strowd, John Trinidad, Adam Vaudreuil, Lindsey M. Voller, Robert G. Micheletti

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


Importance: Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) is known to cause multiple end-organ complications in its acute phase, but less is known about the long-term association with patients' mental health and quality of life. Objective: To examine the chronic physical and psychological sequelae affecting patients with SJS/TEN. Design, Setting, and Participants: A survey study conducted at 11 academic health centers in the US evaluated 121 adults diagnosed with SJS/TEN by inpatient consultive dermatologists between January 1, 2009, and September 30, 2019. Interventions: Patients completed a survey that included the following validated questionnaires: Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), Primary Care Post-Traumatic Stress Disorder Screen (PC-PTSD), and the 12-item Short Form Health Survey (SF-12). The survey also included questions created by the study team regarding fear, patient education, and long-term sequelae relevant to SJS/TEN. Main Outcomes and Measures: Primary outcome measures were the percentage of patients reporting long-term physical sequelae; the percentage of patients with positive results on PHQ-9, GAD-7, and PC-PTSD screening; and the numeric score on the SF-12 (score of 50 defined as average physical and mental well-being). Results: A total of 121 individuals (73 women [60.3%]; mean [SD] age, 52.5 [17.1] years) completed the survey (response rate, 29.2%). The most common long-term physical sequelae reported were cutaneous problems (102 of 121 [84.3%]), ocular problems (72 of 121 [59.5%]), and oral mucosal problems (61 of 120 [50.8%]). A total of 53.3% (64 of 120) of the respondents had results indicating depression on the PHQ-9, 43.3% (52 of 120) showed signs of anxiety on the GAD-7, and 19.5% had results indicating PTSD on the PC-PTSD. The mean (SD) SF-12 Physical Component Summary score was 42.4 (22.8), and the mean Mental Component Summary score was 46.1 (20.9). A total of 28.2% (33 of 117) of the respondents were unable to work, 68.1% (81 of 119) were fearful of taking new medications, and 30.0% (36 of 120) avoided taking prescribed medications for a diagnosed medical condition. Conclusions and Relevance: This survey study found that long-term physical sequelae, depression, and anxiety appear to be common in patients with SJS/TEN, with implications for health and well-being. Improved awareness of these complications may assist health professionals in offering medical care, counseling, and support to patients with SJS/TEN..

Original languageEnglish (US)
Pages (from-to)712-715
Number of pages4
JournalJAMA Dermatology
Issue number6
StatePublished - Jun 2021

ASJC Scopus subject areas

  • Dermatology


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