Patient experiences with psoriasis-associated stigma were described in study data published in the Journal of Psoriasis and Psoriatic Arthritis. In a cross-sectional survey of those with psoriasis, the majority indicated that they anticipated or experienced some level of stigma from others, including perceptions that their condition was “contagious,” “dirty,” or “unattractive.”
Investigators conducted a series of patient surveys at the University of Pennsylvania dermatology clinics. During routine clinic visits, patients were invited to complete a 5-minute survey that captured psoriasis symptoms and experience with disease-related stigma. Survey outcome measures were developed based on scales previously used to assess other types of health-related stigma. Anticipated stigma was measured via a battery of tests, including a stereotype endorsement scale, a social distance scale, and a series of emotional response items. Perceived stigma was assessed using a 6-item validated questionnaire. Patients were also asked to report demographic data, disease severity, and disease duration. Descriptive statistics summarized study results. Linear regression was used to identify correlates of anticipated and perceived stigma.
Complete survey data were available for 106 patients, of whom 55 (51.89%) were men. Mean age was 47.90 ± 16.19 years; mean disease duration was 18.60 ± 14.27 years. The distribution of race/ethnicity was as follows: 75 (70.75%) White; 11 (10.38%) Black; 14 (13.2%) Asian; 3 (2.8%) Hispanic/Latino; and 3 (2.8%) of “other” or unknown race/ethnicity. Nearly a quarter (24%) of patients had concomitant psoriatic arthritis and 25.47% described their psoriasis as “severe.” When asked to identify words they anticipated peers would use to describe psoriasis, 66.98%, 66.0%, and 28.30% of patients endorsed the words “contagious,” “unattractive,” and “disgust[ing],” respectively. In addition, 39.62% of patients endorsed feeling that others “stare” at their skin disease, and 20.7% indicated that they had felt judged by 1 or more physician for their skin condition. Nearly half (42.23%) of patients responded that they made efforts to conceal their psoriasis in their daily life. Also, 35.85% stated that they would “prefer” having another stigmatizing disease instead of psoriasis.
In linear regression analyses, self-reported severe psoriasis was associated with greater anticipation of stereotyping from others (P <.001) compared with mild psoriasis. Severe psoriasis was also associated with greater anticipation of social avoidance from others (P <.001) and greater perceived stigma (P =.017). Notably, physician-reported measures of disease severity were not substantially associated with perceived or anticipated stigma. Younger participants were more likely than older participants to report anticipated and perceived stigma (P <.05). Longer disease duration correlated with greater anticipation of stereotype endorsement from others (P =.03).
Per these survey results, patients with psoriasis frequently perceive stigma from others and anticipate future stigmatizing experiences. Self-reported disease severity, disease duration, and age were also associated with perceived and anticipated stigma.
As study limitations, investigators cited the relatively small cohort size and risk for selection bias: patients with greater perceived stigma may be more likely to complete a survey measuring stigma.
“[Even so,] there is a high prevalence of anticipated and perceived stigma reported by adult patients with psoriasis,” investigators wrote. “Our results suggest that objective measures of disease severity documented in routine clinical care do not reflect a patient’s experience of stigma and that additional methods of accurately screening and monitoring patients for stigmatization are needed to understand the impact of stigma on patients with psoriasis.”
Disclosure: Several study authors declared affiliations with the pharmaceutical industry.
Please see the original reference for a full list of authors’ disclosures.
Wan MT, Pearl RL, Chiesa Fuxench ZC, Takeshita J, Gelfand JM. Anticipated and perceived stigma among patients with psoriasis. J Psoriasis Psoriatic Arthritis. 2020;5(3):93-99. Doi: 10.1177/2475530320924009