Ingen-Housz-Oro S, Alves A, Colin A, Ouedraogo R, Layese R, Canoui-Poitrine F, Chosidow O, Mekontso-Dessap A, Wolkenstein P, de Prost N
Service de Dermatologie, Créteil, France.
Centre National de Référence des Dermatoses Bulleuses Toxiques, Créteil, France.
Br J Dermatol. 2020 Apr;182(4):916-926. doi: 10.1111/bjd.18387. Epub 2019 Oct 15.
Few studies have investigated the global burden of sequelae and health-related quality of life (HRQoL) for survivors of epidermal necrolysis (EN).
To investigate the long-term HRQoL for survivors of EN using validated instruments.
We conducted a single-centre study that enrolled patients who were admitted for EN between 2010 and 2017. HRQoL was assessed via phone interview using the Short Form (SF)-36 questionnaire, Hospital Anxiety and Depression (HAD) scale, Impact of Event Scale-Revised, and general quality-of-life outcomes, including EN-specific sequelae. The primary outcome measure was the physical component summary (PCS) score of the SF-36.
In total, 57 survivors of EN [19 (33%) with intensive care unit (ICU) admission] were interviewed via telephone at a median of 3·6 years (1·9-6·1) after hospital discharge. The median PCS score was 0·44 SDs below that of the age- and sex-matched reference population and was significantly lower for survivors of EN who were admitted to the ICU vs. those who were not [43·7 (28·7-49·3) vs. 51·2 (39·4-56·5), P = 0·042]. The proportion of patients with EN who had HAD-anxiety score ≥ 8 or HAD-depression score ≥ 5 was 54% and 21%, respectively. Physical and mental outcomes did not differ between patients with EN who were admitted to the ICU and survivors of septic shock. Reported EN-specific sequelae were cutaneous (77%), ocular (70%), psychological (60%), dental/oral (49%), genital (30%) and respiratory (18%), with median intensity on a visual analogue scale.
Our study confirms the major burden and long-term impact of EN on quality of life for survivors and emphasizes the need for prolonged close follow-up after the acute phase. What's already known about this topic? Long-term sequelae have been reported in 90% of survivors of epidermal necrolysis (EN). Few studies have investigated the global burden of sequelae and health-related quality of life (HRQoL) in survivors of EN. What does this study add? Survivors of EN, particularly those admitted to the intensive care unit, had poorer physical HRQoL than the French reference population but had comparable HRQoL to survivors of septic shock. Survivors of EN exhibited symptoms of anxiety, depression and post-traumatic stress syndrome. The most frequent sequelae were cutaneous, ocular and psychological, with visual analogue scale scores of 5/10 and 6/10. These results confirm the burden of EN on quality of life.
很少有研究调查表皮坏死松解症（EN）幸存者的后遗症全球负担及与健康相关的生活质量（HRQoL）。
使用经过验证的工具调查EN幸存者的长期HRQoL。
我们开展了一项单中心研究，纳入了2010年至2017年间因EN入院的患者。通过电话访谈，使用简短健康调查问卷（SF-36）、医院焦虑抑郁量表（HAD）、事件影响量表修订版以及包括EN特异性后遗症在内的总体生活质量结果评估HRQoL。主要结局指标是SF-36的身体成分总结（PCS）评分。
共有57名EN幸存者[19名（33%）入住重症监护病房（ICU）]在出院后中位时间3.6年（1.9 - 6.1年）接受了电话访谈。PCS评分中位数比年龄和性别匹配的参考人群低0.44个标准差，入住ICU的EN幸存者的PCS评分显著低于未入住ICU的幸存者[43.7（28.7 - 49.3） vs. 51.2（39.4 - 56.5），P = 0.042]。HAD焦虑评分≥8或HAD抑郁评分≥5的EN患者比例分别为54%和21%。入住ICU的EN患者与感染性休克幸存者的身体和心理结局无差异。报告的EN特异性后遗症为皮肤方面（77%）、眼部（70%）、心理方面（60%）、牙齿/口腔（49%）、生殖器（30%）和呼吸方面（18%），视觉模拟量表评分中位数。
我们的研究证实了EN对幸存者生活质量的重大负担和长期影响，并强调急性期后需要长期密切随访。关于该主题已知的信息有哪些？据报道，90%的表皮坏死松解症（EN）幸存者有长期后遗症。很少有研究调查EN幸存者的后遗症全球负担及与健康相关的生活质量（HRQoL）。本研究补充了哪些内容？EN幸存者，尤其是入住重症监护病房的患者，其身体HRQoL比法国参考人群差，但与感染性休克幸存者的HRQoL相当。EN幸存者表现出焦虑、抑郁和创伤后应激综合征的症状。最常见的后遗症是皮肤、眼部和心理方面的，视觉模拟量表评分为5/10和6/10。这些结果证实了EN对生活质量的负担。
