Exploring the natural and treatment history of vitiligo: perceptions of patients and healthcare professionals from the global VALIANT study

被引:12
作者
Hamzavi, Iltefat H. [1 ]
Bibeau, Kristen [2 ]
Grimes, Pearl [3 ]
Harris, John E. [4 ]
van Geel, Nanja [5 ]
Parsad, Davinder [6 ]
Tulpule, Mukta [7 ]
Gardner, Jackie [8 ]
Valle, Yan [9 ]
Matewa, Gaone Tlhong [10 ]
LaFiura, Christine [11 ]
Ren, Haobo [2 ]
Ezzedine, Khaled [12 ,13 ]
机构
[1] Henry Ford Med Ctr, Detroit, MI 48202 USA
[2] Incyte Corp, Wilmington, DE USA
[3] Vitiligo & Pigmentat Inst Southern Calif, Los Angeles, CA USA
[4] Univ Massachusetts, Med Sch, Worcester, MA USA
[5] Ghent Univ Hosp, Ghent, Belgium
[6] Post Grad Inst Med Educ & Res, Chandigarh, India
[7] Shweta Assoc, Pune, India
[8] Vitiligo Support Int, Lynchburg, VA USA
[9] Vitiligo Res Fdn, New York, NY USA
[10] Beyond Vitiligo, Johannesburg, South Africa
[11] Envis Hlth Partners LLC, Riverside, CT USA
[12] Henri Mondor Univ Hosp, Paris, France
[13] Univ Paris Est Creteil Val de Marne, Paris, France
关键词
QUALITY-OF-LIFE; DEPRESSION; EXTENT;
D O I
10.1093/bjd/ljad245
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
The Vitiligo and Life Impact Among International Communities (VALIANT) study is the first global survey to explore the natural history and management of vitiligo from the perspectives of patients and healthcare professionals (HCPs). In this analysis of 3541 patients with vitiligo and 1203 HCPs treating vitiligo, both patients and HCPs reported similar treatment goals and expressed frustration with the lack of effective therapies. The findings of this survey highlight the need for earlier diagnosis and improved disease management for vitiligo. Background Vitiligo is a chronic autoimmune disease affecting melanocytes, resulting in skin depigmentation. Patients with vitiligo often have reduced quality of life and comorbid autoimmune conditions and have reported a lack of available treatments for their vitiligo. Objectives The Vitiligo and Life Impact Among International Communities (VALIANT) study is the first global survey to explore the natural history and management of vitiligo from the perspectives of patients and healthcare professionals (HCPs). Methods The survey recruited adults (& GE; 18 years) diagnosed with vitiligo and HCPs treating patients with vitiligo via an online panel in 17 countries. Patients were queried regarding clinical characteristics and vitiligo treatment. HCPs were queried regarding diagnosis and management of patients with vitiligo. Results Included in the analysis were 3541 patients and 1203 HCPs. Nearly half (45.2%) of the patients had > 5% affected body surface area; 57.1% reported family history. Patients obtained formal diagnosis after a mean (SD) of 2.4 (4.1) years; 44.9% reported previous misdiagnosis. Many patients (56.7%) reported being told that vitiligo could not be treated; 53.9% of HCPs believed patients who never treated their vitiligo had been told that vitiligo could not be treated. One-quarter of HCPs (26.3%) did not believe that an effective therapy for vitiligo exists; 44.6% of patients reported giving up on finding an effective therapy. Top treatment goals for patients and HCPs, respectively, were reduction or cessation of spread (24.7% and 18.5%) and repigmentation (22.5% and 37.2%). Patient perception of effective care was similar for treatment by dermatologists (66.9%) and primary care HCPs (67.0%). Conclusions Patients with vitiligo and HCPs reported similar treatment goals and expressed frustration with the lack of effective therapies. Patients reported high rates of initial misdiagnosis; many ceased seeking healthcare because they perceived that vitiligo could not be treated. The findings highlight the need for earlier diagnosis and improved disease management for vitiligo.
引用
收藏
页码:569 / 577
页数:9
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