Perceived and Enacted Stigma and the Association with Clinical Characteristics, Work Productivity, Activity Impairment, and Indirect Costs in Adults with Vitiligo in the United States and Europe

Abstract

Background: Vitiligo is a highly stigmatized chronic depigmenting skin disease caused by the destruction of melanocytes. It can profoundly affect psychosocial well-being and even work productivity and economic burden. These challenges often intensify as the disease becomes more visible or extensive. To better understand the role of stigma in the burden of vitiligo, the current study assessed associations between vitiligo stigma and work productivity and activity impairment, and indirect costs among adults with vitiligo in the United States (US) and Europe. 

Methods: Adults (aged ≥18 years) who previously participated in the 2024 National Health and Wellness Survey (NHWS) across the United States (US), United Kingdom (UK), Germany, France, Italy, and Spain were invited to complete a cross-sectional, quantitative online follow-up survey. Eligibility was limited to respondents who self-reported a physician diagnosis of vitiligo. Data from all countries were pooled and analyzed in aggregate. Variables included sociodemographics, clinical characteristics, vitiligo-specific work productivity loss and activity impairment (Work Productivity and Activity Impairment Questionnaire-Specific Health Problem version: scores range from 0-100%, with higher scores indicating greater impairment), and vitiligo-specific annual indirect costs estimated in US dollar values using the Human Capital Approach. Stigma was assessed using the Patient Unique Stigmatization Holistic tool in Dermatology (PUSH-D: scores ranging from 0-68, with higher PUSH-D scores reflecting greater felt/enacted stigma). Results were stratified by PUSH-D severity (mild stigma [0-13] vs. moderate/severe stigma [≥14]). 

Results: 155 adults with vitiligo were analyzed. The mean age was 58.1 (±standard deviation 15.9) years, with 20.8±17.6 years since vitiligo diagnosis; 51.0% were female; and 56.1% had a university degree or higher. 122 adults had PUSH-D scores with 73.8% reporting mild stigma and 26.2% reporting moderate-to-severe stigma. Individuals reporting moderate-to-severe stigma were significantly younger compared with those in the mild group (mean age 46.2 vs. 59.3 years, p<0.001) and had a shorter duration of disease (12.1 vs. 22.2 years, p=0.001). At diagnosis, those reporting moderate-to-severe stigma more frequently reported moderate (31.3%) or severe (25.0%) vitiligo on the face compared with the mild stigma group (13.3% and 0%, respectively, p<0.001). Nearly all individuals in the moderate-to-severe stigma group were currently treating their vitiligo (96.6%) compared with 51.8% in the mild stigma group. Those in the moderate-to-severe stigma group also experienced greater work productivity loss (47.1% vs. 4.5%, p<0.001), activity impairment (40.6% vs. 3.9%, p<0.001), and total annual indirect costs ($14,918 vs. $1,621, p<0.001).  

Conclusions: This study found vitiligo-related stigma severity was strongly associated with greater facial severity perception and shorter duration of disease, suggesting the influence of visible lesions and limited coping time may in part compound vitiligo stigma severity. Individuals experiencing greater impact from stigma reported significantly greater work productivity loss, activity impairment, and higher indirect costs, underscoring the broad, real-world impact of vitiligo beyond its visible manifestations. These results highlight the need for comprehensive care approaches that mitigate vitiligo stigma through the integration of psychosocial support and workplace accommodation alongside conventional clinical management approaches.