• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

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。

Patient Burden of Nonsegmental Vitiligo: A US Real-World Survey of Dermatologists and Their Patients.

作者信息

Rosmarin David, Lofland Jennifer H, Marwaha Simran, Piercy James, Anderson Peter, Liu Jinan

机构信息

Indiana University School of Medicine, Indianapolis, IN, USA.

Incyte Corporation, 1801 Augustine Cut-Off, Wilmington, DE, 19803, USA.

出版信息

Dermatol Ther (Heidelb). 2024 Jun;14(6):1531-1546. doi: 10.1007/s13555-024-01165-5. Epub 2024 May 16.

DOI:10.1007/s13555-024-01165-5
PMID:38753072
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11169217/
Abstract

INTRODUCTION

Vitiligo is a chronic autoimmune disease characterized by destruction of melanocytes, leading to skin depigmentation. Vitiligo can have a high quality-of-life burden and profound impact on psychosocial well-being. The objectives of this study were to describe the self-reported patient burden among patients with nonsegmental vitiligo with ≤ 10% affected body surface area, summarize the physician-reported psychosocial and psychological impact of vitiligo on patient lives, and describe disease characteristics and treatment history, goals, and satisfaction.

METHODS

Data were drawn from the Adelphi Vitiligo Disease Specific Programme™, a real-world, cross-sectional survey with retrospective data collection of physicians and patients with vitiligo, collected in the United States between October 2021 and April 2022. Separate surveys for dermatologists and patients contained questions on clinical and demographic characteristics of patients with vitiligo and burden of vitiligo. Treatment history, goals, and satisfaction were assessed together with the impact of vitiligo on quality of life.

RESULTS

Sixty-one dermatologists provided data for 326 patients with ≤ 10% affected body surface area (adults, n = 221; adolescents, n = 105); 90 of those patients also responded to the survey. The most common treatments were topical corticosteroids, topical calcineurin inhibitors, and narrow-band ultraviolet-B phototherapy, with the main treatment goal being repigmentation. Physician-reported treatment satisfaction was 56%; 25% of patients reported frustration with treatment options. Physicians reported impact of vitiligo on everyday life in 46% of patients. Patients reported 12.7% overall work impairment; mean scores for Hospital Anxiety and Depression Scale anxiety and depression domains were 3.5 and 2.2, respectively, and mean Vitiligo-specific Quality of Life index score was 26.9. Patients with facial involvement experienced higher burden than those without.

CONCLUSION

A high patient burden was reported by dermatologists and their patients with vitiligo who had ≤ 10% affected body surface area, including psychosocial and psychological consequences. These findings highlight an unmet need in the treatment of vitiligo.

摘要

引言

白癜风是一种慢性自身免疫性疾病,其特征是黑素细胞遭到破坏,导致皮肤色素脱失。白癜风会给患者的生活质量带来沉重负担,并对其心理社会幸福感产生深远影响。本研究的目的是描述非节段型白癜风且体表面积受累≤10%的患者自我报告的负担,总结医生报告的白癜风对患者生活的心理社会和心理影响,并描述疾病特征以及治疗史、目标和满意度。

方法

数据来自阿德尔菲白癜风疾病专项计划™,这是一项现实世界的横断面调查,对白癜风医生和患者进行回顾性数据收集,于2021年10月至2022年4月在美国开展。针对皮肤科医生和患者的单独调查问卷包含有关白癜风患者的临床和人口统计学特征以及白癜风负担的问题。治疗史、目标和满意度与白癜风对生活质量的影响一同进行评估。

结果

61名皮肤科医生为326名体表面积受累≤10%的患者提供了数据(成人221例,青少年105例);其中90名患者也对调查做出了回应。最常用的治疗方法是外用皮质类固醇、外用钙调神经磷酸酶抑制剂和窄谱中波紫外线光疗,主要治疗目标是色素再生。医生报告的治疗满意度为56%;25%的患者表示对治疗方案感到沮丧。医生报告46%的患者的白癜风对日常生活有影响。患者报告总体工作受损率为12.7%;医院焦虑抑郁量表焦虑和抑郁领域的平均得分分别为3.5和2.2,白癜风特异性生活质量指数平均得分为26.9。面部受累的患者比未受累的患者负担更重。

结论

皮肤科医生及其白癜风患者报告了较高的负担,这些患者体表面积受累≤10%,包括心理社会和心理方面的后果。这些发现凸显了白癜风治疗中未满足的需求。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/c9109ce8d8b9/13555_2024_1165_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/ac49c1aadd95/13555_2024_1165_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/ff60f1a0c3d5/13555_2024_1165_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/2ce44b447260/13555_2024_1165_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/c9109ce8d8b9/13555_2024_1165_Fig4_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/ac49c1aadd95/13555_2024_1165_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/ff60f1a0c3d5/13555_2024_1165_Fig2_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/2ce44b447260/13555_2024_1165_Fig3_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/17dc/11169217/c9109ce8d8b9/13555_2024_1165_Fig4_HTML.jpg

相似文献

1
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.
2
Assessing Participants' Experiences with Vitiligo from Patient Interviews.通过患者访谈评估白癜风患者的经历
Dermatol Ther (Heidelb). 2024 Sep;14(9):2467-2478. doi: 10.1007/s13555-024-01241-w. Epub 2024 Aug 5.
3
Health-Related Quality of Life Burden Among Adults with Vitiligo: Relationship to Disease Severity and Disease Location.白癜风成年患者的健康相关生活质量负担:与疾病严重程度和发病部位的关系
Dermatol Ther (Heidelb). 2024 Jun;14(6):1633-1647. doi: 10.1007/s13555-024-01187-z. Epub 2024 Jun 2.
4
Burden of disease and treatment patterns in patients with vitiligo: findings from a national longitudinal retrospective study in the UK.英国全国纵向回顾性研究:白癜风患者的疾病负担和治疗模式。
Br J Dermatol. 2024 Jul 16;191(2):216-224. doi: 10.1093/bjd/ljae133.
5
Physician- and Patient-Reported Severity and Quality of Life Impact of Alopecia Areata: Results from a Real-World Survey in Five European Countries.医生和患者报告的斑秃严重程度及对生活质量的影响:来自五个欧洲国家的真实世界调查结果
Dermatol Ther (Heidelb). 2023 Dec;13(12):3121-3135. doi: 10.1007/s13555-023-01057-0. Epub 2023 Oct 27.
6
Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study.白癜风患者的心理健康和心理社会生活质量负担:来自全球 VALIANT 研究的结果。
JAMA Dermatol. 2023 Oct 1;159(10):1124-1128. doi: 10.1001/jamadermatol.2023.2787.
7
Interventions for vitiligo.白癜风的干预措施。
Cochrane Database Syst Rev. 2015 Feb 24;2015(2):CD003263. doi: 10.1002/14651858.CD003263.pub5.
8
Patient and Physician Perceptions of Psoriatic Disease in the United States: Results from the UPLIFT Survey.美国患者与医生对银屑病的认知:UPLIFT调查结果
Dermatol Ther (Heidelb). 2023 Jun;13(6):1329-1346. doi: 10.1007/s13555-023-00929-9. Epub 2023 May 15.
9
Disease Course, Treatment Patterns and Goals Among Patients with Non-segmental Vitiligo Across Europe and the United States.欧美非节段型白癜风患者的疾病进程、治疗模式及目标
Dermatol Ther (Heidelb). 2024 Jul;14(7):1945-1957. doi: 10.1007/s13555-024-01212-1. Epub 2024 Jun 26.
10
Impact of itch and skin pain on quality of life in adult patients with atopic dermatitis in Japan: results from a real-world, point-in-time, survey of physicians and patients.在日本,特应性皮炎成人患者的瘙痒和皮肤痛对生活质量的影响:来自医生和患者的真实世界、即时、调查结果。
Curr Med Res Opin. 2022 Aug;38(8):1401-1410. doi: 10.1080/03007995.2022.2092352. Epub 2022 Jul 5.

本文引用的文献

1
Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study.白癜风患者的心理健康和心理社会生活质量负担:来自全球 VALIANT 研究的结果。
JAMA Dermatol. 2023 Oct 1;159(10):1124-1128. doi: 10.1001/jamadermatol.2023.2787.
2
Exploring the natural and treatment history of vitiligo: perceptions of patients and healthcare professionals from the global VALIANT study.探索白癜风的自然病史和治疗史:来自全球 VALIANT 研究的患者和医疗保健专业人员的看法。
Br J Dermatol. 2023 Oct 25;189(5):569-577. doi: 10.1093/bjd/ljad245.
3
Prevalence and burden of atopic dermatitis involving the head, neck, face, and hand: A cross sectional study from the TARGET-DERM AD cohort.
涉及头、颈、面和手的特应性皮炎的患病率和负担:来自 TARGET-DERM AD 队列的横断面研究。
J Am Acad Dermatol. 2023 Sep;89(3):519-528. doi: 10.1016/j.jaad.2023.04.052. Epub 2023 May 5.
4
Mannose-modified erythrocyte membrane-encapsulated chitovanic nanoparticles as a DNA vaccine carrier against reticuloendothelial tissue hyperplasia virus.甘露糖修饰的红细胞膜包裹的几丁质纳米颗粒作为网状内皮组织增生病毒的 DNA 疫苗载体。
Front Immunol. 2023 Jan 4;13:1066268. doi: 10.3389/fimmu.2022.1066268. eCollection 2022.
5
Guidelines of care for the management of atopic dermatitis in adults with topical therapies.成人特应性皮炎局部治疗管理指南。
J Am Acad Dermatol. 2023 Jul;89(1):e1-e20. doi: 10.1016/j.jaad.2022.12.029. Epub 2023 Jan 12.
6
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.
7
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.
8
Sexual disorders in patients with vitiligo.白癜风患者的性障碍。
Tunis Med. 2021;99(5):504-505.
9
Prevalence of Vitiligo Among Adults in the United States.美国成年人白癜风患病率。
JAMA Dermatol. 2022 Jan 1;158(1):43-50. doi: 10.1001/jamadermatol.2021.4724.
10
Evolution of Patient Perceptions of Psoriatic Disease: Results from the Understanding Psoriatic Disease Leveraging Insights for Treatment (UPLIFT) Survey.银屑病患者认知的演变:利用治疗见解了解银屑病(UPLIFT)调查结果
Dermatol Ther (Heidelb). 2022 Jan;12(1):61-78. doi: 10.1007/s13555-021-00635-4. Epub 2021 Oct 25.