TY - JOUR
T1 - Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
AU - Hoffman, Melissa
AU - Chansky, Peter B.
AU - Bashyam, Arjun R.
AU - Boettler, Michelle A.
AU - Challa, Nayanika
AU - Dominguez, Arturo
AU - Estupinan, Blanca
AU - Gupta, Rachit
AU - Hennessy, Kerry
AU - Huckell, Shawna Nicole
AU - Hylwa-Deufel, Sara
AU - Karikari, Nicole A.
AU - Keller, Jesse J.
AU - Kroshinsky, Daniela
AU - Kullberg, Sara A.
AU - Lake, Eden
AU - Lee, Karen J.
AU - Martinez, Edgar
AU - Michels, Kathryn
AU - Mostaghimi, Arash
AU - Murphy, William
AU - Nutan, Fnu
AU - Osler, Montana
AU - Pahalyants, Vartan
AU - Patel, Tejesh
AU - Seminario-Vidal, Lucia
AU - Strowd, Lindsay C.
AU - Trinidad, John
AU - Vaudreuil, Adam
AU - Voller, Lindsey M.
AU - Micheletti, Robert G.
N1 - Publisher Copyright:
© 2021 American Medical Association. All rights reserved.
PY - 2021/6
Y1 - 2021/6
N2 - 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..
AB - 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..
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U2 - 10.1001/jamadermatol.2021.1136
DO - 10.1001/jamadermatol.2021.1136
M3 - Article
C2 - 33950191
AN - SCOPUS:85105720062
SN - 2168-6068
VL - 157
SP - 712
EP - 715
JO - JAMA Dermatology
JF - JAMA Dermatology
IS - 6
ER -