Research
JAMA Dermatology | Brief Report
Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo
Findings From the Global VALIANT Study
Kristen Bibeau, PhD, MSPH; Khaled Ezzedine, MD, PhD; John E. Harris, MD, PhD; Nanja van Geel, MD, PhD; Pearl Grimes, MD; Davinder Parsad, MD; Mukta Tulpule, MBBS; Jackie Gardner, BA; Yan Valle, MSc, MBA;
Gaone Tlhong Matewa, BBA; Christine LaFiura, BA; Anouk Lindley, MBA; Haobo Ren, PhD; Iltefat H. Hamzavi, MD
IMPORTANCE Patients with vitiligo often have impaired quality of life (QOL) and experience substantial psychosocial burden.
OBJECTIVE To explore the global association of vitiligo with QOL and mental health from the patient perspective.
DESIGN, SETTING, AND PARTICIPANTS This qualitative study of the cross-sectional population-based Vitiligo and Life Impact Among International Communities (VALIANT) study was conducted from May 6, 2021, to June 21, 2021. Potential participants for this
qualitative study were recruited from an online panel in 17 countries. Of 5859 surveyed adults (aged ≥18 years) who reported a vitiligo diagnosis, 3919 (66.9%) completed the survey,
and 3541 (60.4%) were included in the analysis.
EXPOSURES Patients were asked questions regarding their emotional well-being, including QOL and mental health.
MAIN OUTCOMES AND MEASURES Reported analyses are descriptive and hypothesis generating. Vitiligo Impact Patient scale (VIPs) scores ranged from 0 to 60, with higher scores indicating more psychosocial burden.
RESULTS The median age of the 3541 patients was 38 years (range, 18-95 years), and 1933 (54.6%) were male; 1602 patients (45.2%) had more than 5% affected body surface area (BSA; Self-Assessment Vitiligo Extent Score assessed), and 1445 patients (40.8%) had Fitzpatrick skin types IV to VI (ie, darker skin). The mean (SD) global short-form VIPs score was 27.3 (15.6) overall; patients from India (mean [SD], 40.2 [14.1]) reported the highest scores (ie, most burden). The QOL burden according to the scale was profound for patients with more than 5% affected BSA (mean [SD] score, 32.6 [14.2]), darker skin (mean [SD] score, 31.2 [15.6]), and lesions on the face (mean [SD] score, 30.0 [14.9]) or hands (mean [SD],
29.2 [15.2]). At least 40% of patients globally reported that vitiligo frequently affected aspects of their daily lives, including choosing clothes to wear (1956 of 3541 [55.2%]).
Most patients (2103 of 3541 [59.4%]) reported concealing their vitiligo frequently. More than half of patients (2078 of 3541 [58.7%]) reported diagnosed mental health conditions, including anxiety (1019 of 3541 [28.8%]) and depression (866 of 3541 [24.5%]). The Patient Health Questionnaire–9 depression screener showed that 55.0% of patients (1948 of 3541) had moderate to severe depressive symptoms; the highest rates were in India (271 of 303 [89.4%]) and among patients with more than 5% affected BSA (1154 of 1602 [72.0%])
and darker skin (987 of 1445 [68.3%]).
CONCLUSIONS AND RELEVANCE This qualitative study found that, globally, patients with vitiligo reported being substantially affected in their emotional well-being, daily lives,
and psychosocial health; the burden was typically greatest among patients with more than 5% affected BSA, darker skin types, and lesions on the face or hands. Survey findings suggest that patients reported having altered their behavior, expressed clear discontent, and have symptoms consistent with depression, which may be underdiagnosed.
JAMA Dermatol. 2023;159(10):1124-1128. doi:10.1001/jamadermatol.2023.2787 Published online August 30, 2023. Corrected on November 22, 2023.
Author Affiliations: Author affiliations are listed at the end of this article.
Corresponding Author: Kristen Bibeau, PhD, MSPH, Incyte Corporation, 1801 Augustine Cut-Off, Wilmington, DE 19803 (kristen.bibeau@gmail.com).
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Vitiligo is a chronic autoimmune disease characterized by destruction of melanocytes, resulting in pale or white patches of skin.1 Patients with vitiligo encoun-
ter significant quality-of-life (QOL) impairment in routine ac- tivities, employment, and psychosocial health.2,3 Previous re- ports suggest that patients with greater body surface area (BSA) involvement and visible lesions experience greater psychoso- cial burden.4,5 Patients with vitiligo are also more likely to have depression and anxiety than individuals without vitiligo serving as controls.6,7 Psychosocial stressors are associated with vitiligo onset or flares.8,9
There is a need to further understand the global burden of vitiligo from the patient perspective. Here we explore sociodemographic characteristics and QOL and describe dif- ferences in psychosocial burden across geographic regions and subgroups of disease characteristics among patients sur- veyed in the Vitiligo and Life Impact Among International Communities (VALIANT) study.
Methods
Study Participants
This cross-sectional observational qualitative study pro- vided a survey that was administered to adults (aged ≥18 years) who received a diagnosis of vitiligo from a health care profes- sional and were recruited via an online panel from 17 coun- tries between May 6 and June 21, 2021, using a general popu- lation sampling approach (eAppendix in Supplement 1). The study protocol received an exemption from informed con- sent from the Western Institutional Review Board based on survey procedures and use of deidentified data. Participants completed a brief online screener before continuing to the 25- minute survey. The survey was designed to assess self- reported emotional well-being, QOL, and depressive symp- toms in a target sample of approximately 3500 patients. Additional assessment instruments (eg, the Vitiligo Impact Pa- tient scale [VIPs] and the Patient Health Questionnaire–9 de- pression screener) are described in the eAppendix and eTable 1 in Supplement 1. Data were summarized with descriptive statistics. This qualitative study followed the Standards for Re- porting Qualitative Research (SRQR) reporting guidelines.
Statistical Analysis
Analyses included comparison of the 17 countries, 7 geo- graphic regions, and demographic and clinical characteristic
subgroups, with t tests for comparisons of mean values and
χ2 tests for categorical counts. Statistical significance was con- ferred at P < .05 (2-sided). The software used for analysis was WinCross, version 20 (The Analytical Group).
Results
Patient Demographic Characteristics
Of 5859 participants who reported a vitiligo diagnosis and were directed to the survey, 3919 (66.9%) completed the survey, 378 (6.5%) were excluded for data quality issues (eTable 2 in Supple-
ment 1), and 3541 (60.4%) were included in the analysis. The median age was 38 years (range, 18-95 years); 1933 (54.6%) were
male, 1603 (45.3%) were female, and 5 were nonbinary (0.1%). Race and ethnicity were not solicited in France (n = 250) or Germany (n = 250). A total of 929 of the 3041 patients with available data were Asian (30.5%), 283 were Black (9.3%), 144 were Central or South American (4.7%), 135 were Middle East- ern or North African (4.4%), and 1555 were White (51.1%). A total of 75 patients (2.5%) reported race and ethnicity as “other,” as categorized within the survey, with no further break- down available. Thirteen patients (0.4%) preferred not to re- port race and ethnicity. A total of 1445 patients (40.8%) had Fitzpatrick skin types IV to VI (ie, darker skin), and 1602 (45.2%) reported more than 5% affected BSA (Table).
QOL and Emotional Well-Being
Globally, the mean (SD) total 12-item VIPs score was 27.3 (15.6) (Figure 1). Scale scores ranged from 0 to 60, with higher scores indicating more psychosocial burden. Patients in India (mean [SD] score, 40.2 [14.1]), Brazil (mean [SD] score, 29.7 [17.1]), and the US (mean [SD] score, 29.4 [12.8]) reported the highest scores (ie, the greatest burden) among countries surveyed (eFigure 1 in Supplement 1). Worse QOL was observed among patients with more than 5% affected BSA (Vitiligo Impact Patient scale mean [SD] score, 32.6 [14.2] vs 24.1 [13.9] for 1%-5% BSA and
21.6 [16.4] for <1% BSA; both P < .001), darker skin (mean [SD]
score, 31.2 [15.6] vs 24.5 [15.0] for fairer skin; P < .001), and
facial lesions (mean [SD] score, 30.0 [14.9] vs 21.8 [14.9] for no facial lesions; P < .001) or hand lesions (mean [SD] score, 29.2 [15.2] vs 22.5 [14.8] for no hand lesions; P < .001).
More than 30% of patients (range across questions, 32.8% [1160 of 3541] to 53.5% [1893 of 3541]) reported agreeing or strongly agreeing that vitiligo affected multiple aspects of their emotional well-being, including self-esteem or stigma, rela- tionships, and careers (eFigure 2 in Supplement 1). Among all domains evaluated, patients with more than 5% affected BSA consistently reported being more greatly affected compared with those with less extensive disease. A total of 49.0% of pa- tients (1735 of 3541) agreed that having vitiligo made them feel less confident or more self-conscious. Furthermore, 46.6% of patients (1649 of 3541) believed that “no one understands what it’s like to live with vitiligo.” Patients also felt frustrated with
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Table. Patient Demographics and Disease Characteristics Figure 1. Global Vitiligo Impact Patient Scale (VIPs) Scores
Overall (n = 3541) Africa and Middle East (n = 201)
Asia (n = 1005) Australia (n = 75) Brazil (n = 301) Canada (n = 200) Europe (n = 1151) United States (n = 608)
<1% (n = 984)
1%-5% (n = 955)
|
||||||||||||||||
>5% (n = 1602)
I-III (n = 2096) IV-VI (n = 1445)
No (n = 1311) Yes (n = 2143)
No (n = 1180) Yes (n = 2274)
No (n = 742) Yes (n = 2712)
0
|
||||||||||||||||
0 10 20 30 40 50
Mean VIPs score
Abbreviation: BSA, body surface area.
a Multiple answers were accepted.
b Race and ethnicity were not solicited in France (n = 250) or Germany (n = 250).
c Category taken from the survey with no further breakdown available.
d Fitzpatrick skin types are defined as follows: type I, pale white skin; type II, white skin; type III, light brown skin; type IV, moderate brown skin; type V, dark brown skin; and type VI, deeply pigmented dark brown to black skin.
their career prospects, with 41.9% (1483 of 3541) reporting that they believed that they would have been further along in their career if they did not have vitiligo. In contrast, 35.5% (1258 of 3541) reported that having vitiligo made them feel empow- ered, suggesting that the question may have been misinter- preted.
Daily Activities
More than 40% of patients (range across questions, 42.9% [1520 of 3541] to 55.2% [1956 of 3541]) reported that aspects of their daily lives were frequently affected byvitiligo. Among the most stressful daily activities were making clothing choices, attend-
a Fitzpatrick skin types I to III were characterized as fairer skin types, and types IV to VI as darker skin types.
b Patients with 0% affected body surface area (BSA) (n = 87) were excluded from analysis. The mean (SD) VIPs score for Africa and the Middle East was
30.2 (16.0) (P < .001 vs Europe and Canada); for Asia, 28.3 (16.1) (P < .01 vs Europe and Canada); for Brazil, 29.7 (17.1) (P < .001 vs Europe and Canada); and for the US, 29.4 (12.8) (P < .001 vs Europe and Canada). The mean (SD) VIPs score for affected BSA was 24.1 (13.9) for 1% to 5% (P < .001 vs <1% BSA)
and 32.6 (14.2) for more than 5% (P < .001 vs 1%-5% BSA and <1% BSA). The mean (SD) VIPs score for Fitzpatrick skin type IV to VI was 31.2 (15.6)
(P < .001 vs Fitzpatrick skin types I to III). The mean (SD) VIPs score for facial lesions (yes) was 30.0 (14.9) (P < .001 vs no facial lesions); for hand lesions (yes), 29.2 (15.2) (P < .001 vs no hand lesions); and for facial or hand lesions (yes), 28.2 (15.3) (P < .001 vs no facial or hand lesions).
ing social activities, shaking hands, and being intimate with their partner (Figure 2). Furthermore, 59.4% of patients (2103 of 3541) reported that they frequently concealed their vitiligo with makeup or concealer or clothing, the rates of which were higher among patients with more than 5% affected BSA (1164 of 1602 [72.7%]), darker skin (955 of 1445 [66.1%]), and facial
or hand lesions (1690 of 2712 [62.3%]).
Mental Health
More than half of patients (2078 of 3541 [58.7%]) reported di- agnosed mental health conditions, most commonly anxiety dis- order (1019 of 3541 [28.8%]) and depression (866 of 3541 [24.5%]) (eFigure 3 in Supplement 1). Rates of diagnosed men- tal health conditions were highest for patients with more than 5% affected BSA (73.8% [1183 of 1602] vs 52.0% [497 of 955]
for 1%-5% BSA and 40.4% [398 of 984] for <1% BSA; both
P < .001), darker skin (73.4% [1061 of 1445] vs 48.5% [1017 of
2096] for fairer skin; P < .001), and facial lesions (67.2% [1441
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of 2143] vs 45.8% [600 of 1311] for no facial lesions; P < .001)
or hand lesions (67.2% [1527 of 2274] vs 43.6% [514 of 1180] for no hand lesions; P < .001) and for those from India (90.1% [273 of 303]; P < .05 vs other countries).
Globally, 55.0% of patients (1948 of 3541) reported mod- erate to severe symptoms of depression according to the Pa- tient Health Questionnaire–9, with the highest rates among patients from India (271 of 303 [89.4%]) (eFigure 4 in Supple- ment 1). Rates of moderate to severe depressive symptoms were greater among patients with more than 5% affected BSA (1154 of 1602 [72.0%]), darker skin (987 of 1445 [68.3%]), and facial or hand involvement (1607 of 2712 [59.3%]) than among their counterparts (eFigure 5 in Supplement 1).
Discussion
In this first international survey to date exploring the burden
Figure 2. Repercussions of Vitiligo on Patients’ Daily Lives
Determining what clothes to wear Going to the beach or pool Attending parties or events Going to work or school Shaking hands with others
Being intimate with spouse or partner Exercising (yoga, gym, running, etc)
Going to barber, hairdresser, nail salon, etc
Making career choices Managing other diseases or illnesses Obtaining preventive medical procedures
0 10 20 30 40 50 60
of vitiligo, patients, especially those with more than 5% af- fected BSA, darker skin, and facial or hand involvement, re- ported that this burden profoundly affected their emotional well-being, daily activities, and mental health. Smaller studies have reported a higher burden for patients with at least 25% affected BSA or darker skin,2,10 supporting our findings that QOL impairment was greater among patients with more than 5% affected BSA and darker skin vs their counterparts. Le- sion location was also associated with disease burden, with greater QOL impairment and higher prevalence of depressive symptoms among patients with vs without facial or hand in- volvement, expanding on previous results.3,11 Corroborating previous findings, the VALIANT study demonstrated fre- quent avoidance behavior and concealment strategies.11,12 One-quarter of patients in the VALIANT study reported diag- nosed depression, and approximately three-tenths reported anxiety, which may substantially affect health care resources.13 Furthermore, depression may be underdiagnosed, possibly ow- ing to lack of access to mental health care, with more than half of patients in the VALIANT study reporting symptoms consis- tent with moderate to severe depression. Regional differ- ences were observed in the burden of vitiligo and were par- ticularly notable in India. There is reportedly a highly negative perception of vitiligo in India, with patients reporting how having vitiligo has affected their marriage prospects, educa- tion, and employment.14 These perceptions may be a reason why patients in India reported the greatest burden among all countries surveyed.
Limitations
This study has some limitations. For example, the VALIANT survey is limited by factors observed with other online sur- veys, including selection and recall biases and reliance on
Patients, %
Patients were asked how frequently vitiligo affected their decision to participate in daily activities before the COVID-19 pandemic.
self-report of physician diagnosis. Also, patients with lower dis- ease burden may have been less likely to complete the sur- vey. Some questions may also have been misread or misun- derstood by patients. For example, 35.5% of patients (1258 of 3541) reported feeling empowered by their vitiligo in contrast to clinical experience, in which most patients express consid- erable disempowerment.15 This result could be because ter- minology was interpreted differently across ethnic and national groups; therefore, translated survey validation across groups is warranted. Nonetheless, stratifications by BSA and skin type demonstrated similar trends in emotional well-being despite the fact that the questions were a mix of positive and nega- tive characteristics. Finally, multivariate analysis was not un- dertaken; thus, confounding cannot be excluded.
Conclusions
In this qualitative study, the results of the VALIANT survey in- dicate that vitiligo affects patients’ daily lives, emotional well- being, and careers. Patients altered their behavior, expressed clear discontent, and had symptoms consistent with depres- sion, which may be underdiagnosed. Patients with more than 5% affected BSA, darker skin, and facial or hand lesions re- ported being more affected than their counterparts. Findings highlight the need to prioritize reduction in the psychosocial burden of vitiligo and increase efforts to educate patients and health care professionals on vitiligo, particularly in countries where patients experience the highest burden.
ARTICLE INFORMATION
Accepted for Publication: June 22, 2023.
Published Online: August 30, 2023. doi:10.1001/jamadermatol.2023.2787
Correction: This article was corrected on November 22, 2023, to fix an error in Supplement 1.
Open Access: This is an open access article distributed under the terms of the CC-BY-NC-ND License. © 2023 Bibeau K et al. JAMA Dermatology.
Author Affiliations: Incyte Corporation, Wilmington, Delaware (Bibeau, Lindley, Ren); Henri Mondor University Hospital, Paris, France
(Ezzedine); Université Paris-Est Créteil Val de Marne, Paris, France (Ezzedine); University of Massachusetts Medical School, Worcester (Harris); Ghent University Hospital, Ghent, Belgium (van Geel); Vitiligo & Pigmentation Institute of Southern California, Los Angeles (Grimes); Post Graduate
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Institute of Medical Education and Research, Chandigarh, India (Parsad); Shweta Association, Pune, India (Tulpule); Vitiligo Support International, Lynchburg, Virginia (Gardner); Vitiligo Research Foundation, New York, New York (Valle); Beyond Vitiligo, Johannesburg, South Africa (Tlhong Matewa); Envision Health Partners LLC, Riverside, Connecticut (LaFiura); Henry Ford Medical Center, Detroit, Michigan (Hamzavi).
Author Contributions: Drs Bibeau and Hamzavi had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Bibeau, Ezzedine, van Geel, Grimes, Parsad, Tulpule, Gardner, Tlhong Matewa, LaFiura, Lindley, Hamzavi.
Acquisition, analysis, or interpretation of data: Bibeau, Harris, van Geel, Grimes, Gardner, Valle, LaFiura, Ren, Hamzavi.
Drafting of the manuscript: Bibeau, Ezzedine, Harris, Grimes, Gardner, Ren.
Critical review of the manuscript for important intellectual content: Grimes, Parsad.
Statistical analysis: Bibeau, Harris, LaFiura, Ren. Administrative, technical, or material support: Bibeau, Valle, LaFiura, Lindley.
Supervision: Bibeau, Ezzedine, Grimes, Parsad, Tulpule, Hamzavi.
Conflict of Interest Disclosures: Dr Bibeau reported being an employee and shareholder of Incyte during the conduct of the study and outside the submitted work. Dr Ezzedine reported being a consultant for AbbVie, Incyte, La Roche-Posay, Pfizer, Pierre Fabre, Sanofi, ande Viela Bio. Dr Harris reported receiving grants from Aclaris Therapeutics, Celgene, Dermavant, Dermira, EMD Serono, Genzyme/Sanofi, Incyte, LEO Pharma, Pfizer, Rheos Medicines, Stiefel/GSK, Sun Pharmaceuticals, TeVido BioDevices, and Villaris Therapeutics Inc; receiving personal fees from 3rd Rock Ventures, AbbVie, Inc, Aclaris Therapeutics, Admirx, Aldena, Almirall, AnaptysBio, Avita, BiologicsMD, Boston Pharma, BridgeBio, Cogen Therapeutics, Dermavant, EMD Serono, Frazier Management, Genzyme/Sanofi, Granular Therapeutics, Inc, Incyte, Janssen, LEO Pharma, NIRA Biosciences, Methuselah Health, Pandion, Pfizer, Rheos Medicines, Sonoma Biotherapeutics, Sun Pharmaceuticals, Temprian Therapeutics, TeVido BioDevices, The Expert Institute,
Twi Biotech, Villaris Therapeutics Inc, Vimela,
Matchpoint Therapeutics, Merck, and Klirna during the conduct of the study; being a scientific founder for Aldena, Granular Therapeutics, Inc, NIRA Biosciences, Villaris Therapeutics Inc, Vimela, and Klirna; having equity in Aldena, Incyte, NIRA Biosciences, Rheos Medicines, TeVido BioDevices, Villaris Therapeutics Inc, Vimela, and Klirna; holding pending patents for US patent application No.
PCT/US2017/067988 (2016), US patent application No. PCT/US2018/029531 (2017), US provisional
patent application No. 62/835 861 (2019), and US provisional patent application No. 63/331 563 (2021); and holding a patent for US patent No.
11 278 505 (2018). Dr Harris also reported that Villaris was acquired by Incyte. Dr van Geel reported receiving grants from Incyte and consulting for AbbVie, Merck, Sun Pharma, and Pfizer outside the submitted work. Dr Grimes reported receiving grants from Incyte, Skin Better Science, L’Oréal, Pfizer, Johnson & Johnson, Mother Science, and LaserOptek; and consulting for Incyte, Skin Better Science, L’Oréal, AbbVie/Allegran, and Proctor & Gamble outside the submitted work.
Dr Gardner reported receiving fees from Incyte for serving on the Vitiligo Advisory Board and Patient Council during the conduct of the study and fees from Avita for recruitment assistance outside the submitted work. Ms LaFiura reported receiving fees from Incyte as co-owner of the research agency commissioned to collect the data during the conduct of the study. Dr Ren reported receiving salary from Incyte and owning stocks in Incyte outside the submitted work. Dr Hamzavi reported receiving grants from AbbVie; receiving grants from Pfizer, Bayer, Lenicura, Incyte, Estee Lauder, Ferndale Laboratories, Loreal/Laroche Posay, Unigen Inc, Arcutis, Avita, ChemoCentryx, Clinuvel, and ITN paid to his institution; receiving consulting fees from Incyte and Pfizer paid to his institution; receiving consulting fees from UCB, Boehringer Ingelheim, Galderma Laboratories, Novartis, MyDerm Portal, Union Therapeutics, Sonoma, Jansen, and Vimela; being a shareholder in MyDerm Portal; serving on the board of the HS Foundation; and serving as cochair for the Global Vitiligo Foundation. No other disclosures were reported.
Funding/Support: Funding for this research was provided by Incyte Corporation.
Role of the Funder/Sponsor: Incyte Corporation participated in the study design and collaborated with the authors in analyzing and interpreting the data and writing and approving the manuscript but did not collect or manage the data and could not delay or interdict publication of the results.
Data Sharing Statement: See Supplement 2.
Additional Contributions: Writing assistance was provided by Joshua Solomon, PhD, an employee of ICON (Blue Bell, Pennsylvania), and was funded by Incyte Corporation.
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Credit source:
Kristen Bibeau, PhD, MSPH; Khaled Ezzedine, MD, PhD; John E. Harris, MD, PhD; Nanja van Geel, MD, PhD; Pearl Grimes, MD; Davinder Parsad, MD; Mukta Tulpule, MBBS; Jackie Gardner, BA; Yan Valle, MSc, MBA;
Gaone Tlhong Matewa, BBA; Christine LaFiura, BA; Anouk Lindley, MBA; Haobo Ren, PhD; Iltefat H. Hamzavi, MD
1128 JAMA Dermatology October 2023 Volume 159, Number 10 jamadermatology.com
