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[白癜风患者的生活质量、疾病负担及医疗需求]

[Quality of life, disease burden and healthcare need of patients with vitiligo].

作者信息

Augustin Matthias, Gewiss Caroline, Ben-Anaya Nesrine, Böhm Markus

机构信息

Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen (IVDP), Universitätsklinikum Hamburg-Eppendorf (UKE), Martinistr. 42, 20246, Hamburg, Deutschland.

Klinik für Hautkrankheiten, Universitätsklinikum Münster, Münster, Deutschland.

出版信息

Dermatologie (Heidelb). 2024 May;75(5):404-411. doi: 10.1007/s00105-024-05312-z. Epub 2024 Mar 11.

DOI:10.1007/s00105-024-05312-z
PMID:38466405
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11065915/
Abstract

BACKGROUND

With a prevalence of 0.5-2%, vitiligo is one of the most common skin disorders worldwide with loss of pigment. The skin disease has a disfiguring, often stigmatising character and is often associated with psychosocial distress.

OBJECTIVE

To provide an overview of the psychosocial impairment, disease burden and resulting health care needs of patients with vitiligo.

MATERIALS AND METHODS

Narrative review based on a literature search in PubMed for the years 1996-2022 on disease burden, quality of life and stigmatization is provided.

RESULTS

The search yielded 175 relevant original papers including clinical studies, meta-analyses and systematic reviews (n = 65) for the search period. A large number of studies document that vitiligo is associated with considerable psychosocial stress and relevant losses in quality of life. Problem areas particularly concern stigmatisation, sexual dysfunction, anxiety, reduced self-esteem and problems at work. The observed increased levels of anxiety and depression correlate with the severity and activity of vitiligo. Often, comorbidity also contributes to reduced self-esteem and social isolation. These factors determine a high need for care in a relevant proportion of those affected.

CONCLUSION

Vitiligo is not primarily a cosmetic problem, but a disease requiring treatment according to the World Health Organisation's definition of health as physical, mental and social well-being. The benefits of treatment options are to be measured by their effects on patient-reported outcomes.

摘要

背景

白癜风是全球最常见的色素脱失性皮肤病之一,患病率为0.5%-2%。这种皮肤病具有毁容性,常常带来污名化,且常与心理社会困扰相关。

目的

概述白癜风患者的心理社会损害、疾病负担及由此产生的医疗保健需求。

材料与方法

基于对1996年至2022年期间PubMed上关于疾病负担、生活质量和污名化的文献检索进行叙述性综述。

结果

在检索期间,检索出175篇相关原创论文,包括临床研究、荟萃分析和系统评价(n = 65)。大量研究表明,白癜风与相当大的心理社会压力和生活质量的相关损失有关。问题领域尤其涉及污名化、性功能障碍、焦虑、自尊降低和工作问题。观察到的焦虑和抑郁水平升高与白癜风的严重程度和活动度相关。通常,合并症也会导致自尊降低和社会隔离。这些因素决定了相当一部分患者有很高的护理需求。

结论

根据世界卫生组织对健康的定义,即身体、心理和社会福祉,白癜风并非主要是一个美容问题,而是一种需要治疗的疾病。治疗方案的益处应以其对患者报告结局的影响来衡量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0670/11065915/a56a138240ec/105_2024_5312_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0670/11065915/a56a138240ec/105_2024_5312_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0670/11065915/a56a138240ec/105_2024_5312_Fig1_HTML.jpg

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1
[Quality of life, disease burden and healthcare need of patients with vitiligo].[白癜风患者的生活质量、疾病负担及医疗需求]
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2
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本文引用的文献

1
Risk of Melanoma and Nonmelanoma Skin Cancer in People with Vitiligo: United Kingdom Population-Based Cohort Study.白癜风患者罹患黑素瘤和非黑素瘤皮肤癌的风险:英国基于人群的队列研究。
J Invest Dermatol. 2023 Nov;143(11):2204-2210. doi: 10.1016/j.jid.2023.04.013. Epub 2023 May 3.
2
Quality of life measurement in vitiligo. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes with external experts.白癜风患者的生活质量评估。欧洲皮肤病学会和性病学会生活质量和以患者为中心结局工作组的立场声明,并有外部专家参与。
J Eur Acad Dermatol Venereol. 2023 Jan;37(1):21-31. doi: 10.1111/jdv.18593. Epub 2022 Oct 19.
3
Worsening Quality of Life in Young Adult, Highly Educated, and Married Female Patients with Vitiligo: A Hospital-Based Case Control Study in Taiwan.
台湾地区基于医院的病例对照研究:白癜风对年轻、高学历、已婚女性患者生活质量的影响日益严重。
Int J Environ Res Public Health. 2022 May 31;19(11):6741. doi: 10.3390/ijerph19116741.
4
Vitiligo prevalence and quality of life among adults in Europe, Japan and the USA.白癜风在欧洲、日本和美国成年人中的患病率和生活质量。
J Eur Acad Dermatol Venereol. 2022 Oct;36(10):1831-1844. doi: 10.1111/jdv.18257. Epub 2022 Jun 14.
5
The humanistic burden of vitiligo: a systematic literature review of quality-of-life outcomes.白癜风的人文负担:生活质量结果的系统文献回顾。
J Eur Acad Dermatol Venereol. 2022 Sep;36(9):1507-1523. doi: 10.1111/jdv.18129. Epub 2022 May 11.
6
S1-Leitlinie: Diagnostik und Therapie der Vitiligo.S1指南:白癜风的诊断与治疗
J Dtsch Dermatol Ges. 2022 Mar;20(3):365-379. doi: 10.1111/ddg.14713_g.
7
Sexual disorders in patients with vitiligo.白癜风患者的性障碍。
Tunis Med. 2021;99(5):504-505.
8
Systemic therapies in vitiligo: a review.白癜风的全身治疗:综述
Int J Dermatol. 2023 Mar;62(3):279-289. doi: 10.1111/ijd.16114. Epub 2022 Feb 7.
9
Risk of skin cancer after ultraviolet phototherapy in patients with vitiligo: a systematic review and meta-analysis.白癜风患者接受紫外线光疗后皮肤癌的风险:系统评价和荟萃分析。
Clin Exp Dermatol. 2022 Apr;47(4):692-699. doi: 10.1111/ced.15010. Epub 2021 Dec 10.
10
Psychosocial Effects of Vitiligo: A Systematic Literature Review.白癜风的社会心理影响:系统文献回顾。
Am J Clin Dermatol. 2021 Nov;22(6):757-774. doi: 10.1007/s40257-021-00631-6. Epub 2021 Sep 23.