Department of Dermatology and Allergy, Technical University of Munich, Munich, Germany.
Christine Kühne Center for Allergy Research and Education (CK-Care), Davos, Switzerland.
J Eur Acad Dermatol Venereol. 2019 Jul;33(7):1331-1340. doi: 10.1111/jdv.15634. Epub 2019 Jun 6.
Atopic eczema (AE, atopic dermatitis) is one of the most common non-communicable inflammatory skin diseases affecting 1-5% of the adult population in Europe with marked impairment in quality of life. In spite of great progress in understanding the pathophysiology of disturbed skin barrier and immune deviation, AE still represents a problem in daily clinical practice. Furthermore, the true impact of AE on individual suffering is often not recognized.
With a large European study, we wanted to provide insights into the actual suffering and individual burden of disease in adult patients with AE.
A total of 1189 adult patients (18-87 years, 56% female) with moderate to severe AE were recruited in nine European countries by dermatologists or allergists together with the help of patient organizations. A computer-assisted telephone interview was performed by experienced interviewers between October 2017 and March 2018. The following instruments were used to assess severity or measure quality of life: Patient-Oriented Eczema Measure (POEM), Dermatology Life Quality Index (DLQI), Hospital Anxiety and Depression Scale (HADS-D) and a newly developed Atopic Eczema Score of Emotional Consequences (AESEC). Patients were also asked to self-assess the severity of their disease.
Despite current treatment, 45% of participants still had actual moderate to very severe AE in POEM. Due to their skin disease, 57% missed at least 1 day of work in the preceding year. DLQI showed moderate to extremely large impairment in 55%. According to HADS-D, 10% scored on or above the threshold of eight points with signs of depressive symptoms. Assessed with AESEC, 57% were emotionally burdened with feelings such as 'trying to hide the eczema', 'feeling guilty about eczema', having 'problems with intimacy' and more. Of persons actually suffering from severe AE, 88% stated that their AE at least partly compromised their ability to face life.
This real-life study shows that adults with a moderate to severe form of AE are suffering more than what would be deemed acceptable. There is a need for increased awareness of this problem among healthcare professionals, policymakers and the general public to support research in the development of new and more effective treatments and provide access to better and affordable health care for affected patients.
特应性皮炎（AE，特应性皮炎）是欧洲成年人中最常见的非传染性炎症性皮肤病之一，影响 1-5%的成年人，生活质量明显受损。尽管在理解受损的皮肤屏障和免疫偏差的病理生理学方面取得了巨大进展，但 AE 在日常临床实践中仍然是一个问题。此外，AE 对个体痛苦的实际影响往往没有得到认识。
通过一项大型的欧洲研究，我们希望深入了解成年 AE 患者的实际痛苦和疾病的个体负担。
共招募了来自 9 个欧洲国家的 1189 名成年中重度 AE 患者（18-87 岁，56%为女性），由皮肤科医生或过敏科医生与患者组织合作招募。2017 年 10 月至 2018 年 3 月期间，由经验丰富的访谈者进行计算机辅助电话访谈。以下仪器用于评估严重程度或衡量生活质量：患者导向的湿疹量表（POEM）、皮肤病生活质量指数（DLQI）、医院焦虑抑郁量表（HADS-D）和新开发的特应性皮炎情绪后果量表（AESEC）。患者还被要求自我评估疾病的严重程度。
尽管进行了当前的治疗，45%的参与者在 POEM 中仍有中度至重度的 AE。由于皮肤疾病，57%的患者在过去一年中至少有 1 天缺勤。DLQI 显示出 55%的中度至极大的损害。根据 HADS-D，10%的患者得分在 8 分或以上，有抑郁症状。根据 AESEC 评估，57%的患者情绪负担沉重，例如“试图隐藏湿疹”、“对湿疹感到内疚”、“与亲密关系有问题”等。在实际患有重度 AE 的患者中，88%的患者表示，他们的 AE 在一定程度上影响了他们面对生活的能力。
这项真实生活研究表明，患有中重度 AE 的成年人所遭受的痛苦超过了可以接受的程度。医疗保健专业人员、政策制定者和公众需要提高对这一问题的认识，以支持新的、更有效的治疗方法的研究，并为受影响的患者提供更好和负担得起的医疗保健。
