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欧洲皮肤病患者的生活质量与污名化:来自“皮肤病负担”欧洲皮肤病与性病学会项目的一项大型调查

Quality of life and stigmatization in people with skin diseases in Europe: A large survey from the 'burden of skin diseases' EADV project.

作者信息

Gisondi Paolo, Puig Luis, Richard Marie Aleth, Paul Carle, Nijsten Tamar, Taieb Charles, Stratigos Alex, Trakatelli Myrto, Salavastru Carmen

机构信息

Section of Dermatology and Venereology, Department of Medicine, University of Verona, Verona, Italy.

Department of Dermatology, Hospital de la Santa Creu i Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain.

出版信息

J Eur Acad Dermatol Venereol. 2023 Oct;37 Suppl 7:6-14. doi: 10.1111/jdv.18917.

Abstract

BACKGROUND

Several large studies on the burden of skin diseases have been performed in patients recruited in hospitals or clinical centres, thus missing people with skin diseases who do not undergo a clinical consultation.

OBJECTIVES

To evaluate the burden of the most common dermatological diseases in adult patients across Europe, in terms of quality of life, work life, and stigmatization.

METHODS

Population-based survey on a representative sample of the European general population aged 18 years or older. Participants who declared to have had one or more skin problem or disease during the previous 12 months completed the Dermatology Life Quality Index questionnaire, and answered questions regarding the impact of their skin disease on daily and work life, anxiety/depression, and stigmatization.

RESULTS

The study population included 19,915 individuals, 44.7% of whom were men. Quality of life was particularly impaired in people with hidradenitis suppurativa (HS), and sexually transmitted diseases. About a half of participants with acne, alopecia, or chronic urticaria, and about 40% of those with atopic dermatitis (AD), skin cancers, or psoriasis reported a modest to extremely large effect of the disease on their quality of life. Overall, 88.1% of participants considered their skin disease as embarrassing in personal life and 83% in work life. About half of the respondents reported sleeping difficulty, feeling tired, and impact of the disease on taking care of themselves. Concerning stigmatization, 14.5% felt to have been rejected by others because of the skin disease, and 19.2% to have been looked at with disgust. Anxiety and depression were frequently reported by patients with all the diseases.

CONCLUSIONS

Skin diseases may heavily affect patients' daily and work life, and cause feelings of stigmatization. An early intervention is needed to avoid consequences on the patients' life course.

摘要

背景

已针对在医院或临床中心招募的患者开展了多项关于皮肤病负担的大型研究,因此遗漏了未接受临床诊疗的皮肤病患者。

目的

从生活质量、工作生活及污名化方面评估欧洲成年患者中最常见皮肤病的负担。

方法

对年龄在18岁及以上的欧洲普通人群的代表性样本进行基于人群的调查。宣称在过去12个月内曾患一种或多种皮肤问题或疾病的参与者完成皮肤病生活质量指数问卷,并回答有关其皮肤病对日常生活和工作生活的影响、焦虑/抑郁及污名化的问题。

结果

研究人群包括19915人,其中44.7%为男性。化脓性汗腺炎(HS)患者及性传播疾病患者的生活质量尤其受损。约一半痤疮、脱发或慢性荨麻疹患者,以及约40%特应性皮炎(AD)、皮肤癌或银屑病患者报告称疾病对其生活质量有中度至极大影响。总体而言,88.1%的参与者认为其皮肤病在个人生活中令人尴尬,83%的参与者认为在工作生活中令人尴尬。约一半的受访者报告存在睡眠困难、感到疲惫以及疾病对自我照料的影响。关于污名化,14.5%的人感觉因皮肤病被他人拒绝,19.2%的人感觉被厌恶地看待。所有疾病患者均频繁报告存在焦虑和抑郁。

结论

皮肤病可能严重影响患者的日常生活和工作生活,并导致污名化感受。需要早期干预以避免对患者生命历程产生影响。

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