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白癜风——一种疾病:关于污名化、生活质量受损和心理社会共病的立场文件。

Vitiligo - a disease: A position paper on stigmatization, life quality impairment and psychosocial comorbidity.

机构信息

Department of Dermatology, University Hospital Münster, Münster, Germany.

Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

出版信息

J Dtsch Dermatol Ges. 2024 Oct;22(10):1327-1335. doi: 10.1111/ddg.15503. Epub 2024 Aug 21.

DOI:10.1111/ddg.15503
PMID:39167551
Abstract

Vitiligo is a common disorder characterized by the visible loss of skin pigmentation. Non-segmental vitiligo (NSV) is the major subtype. The disease is caused by autoimmune-mediated destruction of melanocytes. Vitiligo leads to stigmatization and a significant reduction in quality of life. Disregarding the psychosocial burden, vitiligo is sometimes viewed solely as a cosmetic problem and, according to a global survey, is diagnosed on average only after 2.4 years. This delay contributes to a considerable burden of disease, including suicidal ideation. Stigmatization promotes the development of psychological comorbidities such as anxiety and depressive disorders, with prevalence rates varying by country and study (0.1%-67.9%). Data for Germany are heterogeneous and largely based on estimates. Due to psychosocial factors, the inflammatory component, and a higher incidence of somatic comorbidities, NSV may be regarded as an inflammatory systemic disease. We recommend optimizing care by incorporating the assessment of quality of life as a standard in routine care, in addition to monitoring disease activity. Moreover, early screening for psychological comorbidities is crucial to initiate appropriate treatment before the condition becomes chronic and cumulative (irreversible) impairments occur. The goal is a personalized and patient-centered integrated care approach that sustainably improves the health status of those affected.

摘要

白癜风是一种常见的疾病,其特征是皮肤色素明显丧失。非节段性白癜风(NSV)是主要亚型。这种疾病是由自身免疫介导的黑色素细胞破坏引起的。白癜风会导致患者受到歧视,并显著降低生活质量。除了心理社会负担,如果不考虑这方面的影响,白癜风有时仅被视为一种美容问题,根据一项全球调查,平均要经过 2.4 年才会被确诊。这种延迟导致了相当大的疾病负担,包括自杀意念。歧视会促进焦虑和抑郁等心理共病的发展,其患病率因国家和研究而异(0.1%-67.9%)。德国的数据存在差异,且主要基于估计值。由于心理社会因素、炎症成分以及更高的躯体共病发病率,NSV 可能被视为一种炎症性系统性疾病。我们建议通过将生活质量评估纳入常规护理的标准来优化护理,除了监测疾病活动度以外。此外,早期筛查心理共病对于在病情发展为慢性和累积性(不可逆转)损害之前开始适当的治疗至关重要。目标是采用个性化和以患者为中心的综合护理方法,可持续改善患者的健康状况。

相似文献

1
Vitiligo - a disease: A position paper on stigmatization, life quality impairment and psychosocial comorbidity.白癜风——一种疾病:关于污名化、生活质量受损和心理社会共病的立场文件。
J Dtsch Dermatol Ges. 2024 Oct;22(10):1327-1335. doi: 10.1111/ddg.15503. Epub 2024 Aug 21.
2
[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]
Dermatologie (Heidelb). 2024 May;75(5):404-411. doi: 10.1007/s00105-024-05312-z. Epub 2024 Mar 11.
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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.
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Stigma in vitiligo: associated factors and severity strata of the Patient Unique Stigmatization Holistic tool in Dermatology (PUSH-D) score.白癜风患者的耻辱感:皮肤病患者独特耻辱化整体评估工具(PUSH-D)评分的相关因素和严重程度分层。
Br J Dermatol. 2024 Apr 17;190(5):712-717. doi: 10.1093/bjd/ljae020.
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Psychosomatic aspects of vitiligo.白癜风的身心方面
Clin Dermatol. 2017 May-Jun;35(3):292-297. doi: 10.1016/j.clindermatol.2017.01.001. Epub 2017 Jan 21.
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Cumulative life course impairment in vitiligo.白癜风累积性终生损害。
Curr Probl Dermatol. 2013;44:102-17. doi: 10.1159/000350010. Epub 2013 May 24.
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Quality of Life, Burden of Disease, Co-morbidities, and Systemic Effects in Vitiligo Patients.白癜风患者的生活质量、疾病负担、合并症及全身影响
Dermatol Clin. 2017 Apr;35(2):117-128. doi: 10.1016/j.det.2016.11.002.
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Disease-related behavioral patterns and experiences affect quality of life in children and adolescents with vitiligo.疾病相关行为模式和经历会影响儿童和青少年白癜风患者的生活质量。
Int J Dermatol. 2014 Jan;53(1):43-50. doi: 10.1111/j.1365-4632.2012.05656.x. Epub 2013 May 21.
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Patient Burden of Nonsegmental Vitiligo: A US Real-World Survey of Dermatologists and Their Patients.非节段性白癜风患者的负担:美国皮肤科医生及其患者的真实世界调查。
Dermatol Ther (Heidelb). 2024 Jun;14(6):1531-1546. doi: 10.1007/s13555-024-01165-5. Epub 2024 May 16.
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Stigmatization experience, coping and sense of coherence in vitiligo patients.白癜风患者的污名化经历、应对方式和连贯感
J Eur Acad Dermatol Venereol. 2007 Apr;21(4):456-61. doi: 10.1111/j.1468-3083.2006.01897.x.

引用本文的文献

1
The Lived Experience of Patients Diagnosed with Vitiligo and a Preliminary Conceptual Disease Model: Insights from Patients, Patient Advocates, and Clinicians.白癜风患者的生活体验及初步概念性疾病模型:来自患者、患者权益倡导者和临床医生的见解
Dermatol Ther (Heidelb). 2025 Aug 15. doi: 10.1007/s13555-025-01510-2.
2
Vitiligo Exchange: An Expert Panel Discussion of Two Clinical Cases.白癜风交流:两个临床病例的专家小组讨论
J Clin Aesthet Dermatol. 2024 Dec;17(12 Suppl 3):S9-S18.