Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
Long-term Physical and Psychological Outcomes of Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis
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DOI：
10.1001/jamadermatol.2021.1136
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发表时间：
2021-05-05
期刊：
影响因子：
10.9
通讯作者：
Micheletti, Robert G.
中科院分区：
文献类型：
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作者：
Hoffman, Melissa;Chansky, Peter B.;Micheletti, Robert G.
Stevens-Johnson综合征/中毒性表皮坏死松解症（SJS/TEN）在急性期可引起多种终末器官并发症，但其与患者心理健康和生活质量的长期关系尚不清楚。和参与者在美国11个学术健康中心进行的一项调查研究评估了2009年1月1日至9月30日期间住院皮肤科医生诊断为SJS/TEN的121名成年人，患者完成了一项调查，其中包括以下有效问卷：患者健康问卷-9（PHQ-9），广泛性焦虑症-7（GAD-7），初级保健创伤后应激障碍筛查（PC-PTSD）和12项简明健康调查表（SF-12）。调查还包括研究小组提出的关于恐惧、患者教育和与SJS/TEN相关的长期后遗症的问题。主要结果和测量主要结果测量是报告长期身体后遗症的患者的百分比; PHQ-9、GAD-7和PC-PTSD筛查阳性结果的患者的百分比; SF-12的数字分数（50分定义为平均身心健康）。（73名女性[60.3%];平均[SD]年龄，52.5 [17.1]岁）完成了调查（应答率，29.2%）。报告的最常见的长期身体后遗症是皮肤问题（102/121 [84.3%]）、眼部问题（72/121 [59.5%]）和口腔粘膜问题（61/120 [50.8%]）。共有53.3%（64/120）的受访者在PHQ-9上显示出抑郁的结果，43.3%（52/120）在GAD-7上显示出焦虑的迹象，19.5%在PC-PTSD上显示出PTSD的结果。平均（SD）SF-12身体健康总评评分为42.4（22.8），平均精神健康总评评分为46.1（20.9）。合计28.2%（117人中有33人）无法工作，占68.1%。（81/119）害怕服用新药，30.0%（120人中有36人）避免服用诊断为疾病的处方药。结论和相关性这项调查研究发现，长期的身体后遗症，抑郁症，和焦虑似乎在SJS/TEN患者中很常见，对健康和福祉有影响。提高对这些并发症的认识可能有助于卫生专业人员为SJS/TEN患者提供医疗护理，咨询和支持。(c)2021美国医学会All rights reserved.
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.