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Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
Journal article   Open access   Peer reviewed

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, …
JAMA dermatology (Chicago, Ill.), v 157(6), pp 712-715
Jun 2021
PMID: 33950191
url
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8100906View
Published, Version of Record (VoR)Open Access (License Unspecified) Open

Abstract

Adult Female Humans Middle Aged Mouth Mucosa Physical Examination - methods Retrospective Studies Stevens-Johnson Syndrome - drug therapy Quality of Life
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. (c) 2021 American Medical Association. All rights reserved.

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Collaboration types
Domestic collaboration
Web of Science research areas
Dermatology
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