Anticipated and Perceived Stigma Among Patients With Psoriasis

Abstract

Background:

Perceived stigma among patients with psoriasis (PWP) is associated with poorer quality of life.

Objective:

To determine the prevalence and predictors of stigmatizing attitudes that PWP expect and experience from others.

Methods:

We conducted a survey using validated outcome measures to assess the extent to which PWP anticipate and perceive stigma from others. Demographic and clinical characteristics were obtained from electronic medical records.

Results:

Patients (n = 106) were 48.11% female, 70.75% white, and had a mean age ± SD of 47.90 ± 16.19 years old. Of all, 25.47% self-reported their psoriasis as severe. Mean physician global assessment score ± SD was 2.98 ± 1.81. Two-thirds (66.98%) of patients reported that, in response to seeing their psoriasis-affected skin, they anticipated others to stereotype them as “contagious.” Linear regression analyses demonstrated that patient-reported severe psoriasis, compared to mild psoriasis, was associated with greater anticipation of negative stereotypes, social avoidance, and perceived stigma from others (P values < .05). Physician-measured body surface area and global assessment scores were not significantly associated with any outcome.

Conclusion:

Prevalence of anticipated and perceived stigma among PWP is high. Our results suggest that objective measures of severity may not identify patients at risk of stigma-related distress. Additional methods, such as directly inquiring about stigmatizing experiences, may be needed.

Introduction

Psoriasis is a chronic immune-mediated disease that affects approximately 1% to 3% of the population worldwide.^1,2 Similar to other chronic conditions, such as cancer and diabetes, psoriasis can lead to loss of employment, physical and mental disability, and financial hardship resulting in impaired quality of life.^3–7 However, patients with chronic dermatologic diseases carry an additional burden from social stigma due to the visibility of disease. In one study, over 90% of patients with psoriasis reported some level of perceived stigma due to their condition.⁸

Discrimination and stigma may exacerbate the negative psychological consequences experienced by patients with psoriasis.^9–14 Indeed, psoriasis has a stronger association with mental health outcomes (eg, depression and anxiety) compared to other dermatologic diseases such as acne, atopic dermatitis, and alopecia areata.^15–19 Identifying patients with psoriasis who may be vulnerable to stigma and its associated health outcomes is essential for improving patient care. There are limited data from the United States reporting the anticipation of stigma among patients with psoriasis. The current study aimed to quantitatively assess the extent to which patients with psoriasis anticipate and perceive stigma from others. Specifically, this study assessed patients’ anticipated stigma (ie, patients’ expectations of how laypersons would respond to seeing their psoriasis lesions); perceived stigma from others (eg, mistreatment from others due to their visible skin disease); engagement in avoidance or escape coping behaviors to prevent stigmatization; and characteristics associated with anticipated, perceived, and avoidance of stigma.

Methods

Patient and Study Design

Patients with psoriasis were recruited from dermatology clinics at the University of Pennsylvania. Patients were consecutively approached at their routine clinic visit and asked to complete a 5-minute survey about “skin and health,” for which they would be compensated with a 1 of 20 chance to win US$50 in a raffle. Participants had to be at least 18 years old with a diagnosis of psoriasis. Interested patients were led to a private room, where they provided informed consent and completed the survey on an electronic tablet. After completing the survey, participants received a written debriefing statement about psoriasis and had the opportunity to ask questions of the study staff. The institutional review board of University of Pennsylvania approved all procedures.

Outcome Measures

Outcome measures were based on scales previously used to study other types of health-related stigma and adapted for psoriasis.^20–26 Psoriasis subspecialists (J.M.G., J.T., Z.C.F.) were consulted for the development of psoriasis-specific items. To assess anticipated stigma, patients rated how they thought “others” would respond to seeing their own psoriatic lesions. The first outcome measurement was a stereotype endorsement scale,²³ which allowed for semantic differential ratings of 11 pairs of adjectives (eg, dirty and clean). Of 5 potential circles (coded 1–5), patients were asked to mark the circle closest to the adjective they believed “others” would use to describe them if they were to see their psoriasis lesions. Item scores were averaged, and higher scores indicated a greater anticipated stereotype endorsement. Anticipated stigma was also assessed with a social distance scale that assessed the extent to which patients thought others would desire to avoid them should they see their lesions (9 items ranging from 1–5, scores were averaged, and higher scores indicated greater anticipated social distance).²¹ Lastly, anticipated stigma was measured by emotional response items,²⁴ where patients were asked to rate from 1 to 5 the extent to which they thought “others” would feel compassion, pity, disgust, blame, contempt, and curiosity in response to seeing their psoriasis lesions. Item scores were averaged, and higher scores indicated a greater emotional response.

Patients’ perceived stigma (ie, the extent to which patients observed that others avoided them or treated them poorly because of their skin) was assessed with a 6-item validated questionnaire, rated on a 1 to 4 scale, with a higher score indicating greater perceived stigma.²⁷ Patients also reported whether they had ever felt judged by a physician because of their psoriasis.

To measure avoidance of psoriasis-related stigma, patients were asked if they take measures to hide their psoriasis. As a secondary measure, patients ranked, from first to eighth place, their preference for having psoriasis in relation to 7 other stigmatized conditions (obesity, depression, alcoholism, HIV/AIDS, diabetes, facial disfigurement, and missing a limb).²⁶

Patients reported their demographic characteristics, self-reported disease severity in general (mild, moderate, or severe), visibility (scale of 1–7, with a higher score indicating more psoriasis visible), and duration of disease. Additional clinical details from the visit/survey date, such as comorbidities, Physician Global Assessment (PGA) score (the overall score was an average of 3 characteristics (erythema, induration, and scale) on a 6-point scale ranging from 0–5),²⁸ and physician-assessed body surface area affected by psoriasis, were obtained from electronic medical records.

Statistical Analyses

Demographics was summarized with descriptive statistics. In addition to computing continuous mean scores, for ratings of anticipated social distance, stereotype endorsement, and emotional responses, the percentage of participants scoring a 4 or 5 on each item (indicating stronger item endorsement) was computed to create dichotomous measurements. For the perceived stigma rating, the percentage of participants scoring a 3 or 4 on each item (indicating greater perceived stigma) was computed to create dichotomous measurements (in addition to a continuous mean score). Binary questions assessing perceived and avoidance of stigma were reported descriptively. Linear regression was used to test the effects on all outcomes of age, gender, race, education, employment status, income, duration of disease, disease severity, disease visibility, and a diagnosis of psoriatic arthritis.

Results

Participant Characteristics

Consent was obtained from 117 patients, of which 111 completed at least 1 outcome measure. Five patients were excluded for not having a confirmed diagnosis of psoriasis, leaving a total of 106 participants. Demographics and psoriasis-related characteristics are presented in Table 1. Most patients were male (51.89%), white (70.75%), and had a mean age ± SD of 47.90 ± 16.19 years. Approximately one quarter (24.04%) of patients had concomitant psoriatic arthritis and 25.47% of patients self-reported their psoriasis as severe. Mean PGA score ± SD was 2.98 ± 1.81, the average physician-assessed body surface area affected ± SD was 2.78% ± 4.68%, and mean duration of psoriasis ± SD was 18.60 ± 14.27 years.

Table 1.

Participant Characteristics (Mean ±SD or n [%]).

Variable	Patients (N = 106)
Age	47.90 ± 16.19
Sex
Men	55 (51.89%)
Women	51 (48.11%)
Body mass index (m/kg2)	30.12 (9.99)
Race/ethnicity
White	75 (70.75%)
Black/African American	11 (10.38%)
Asian	14 (13.21%)
Other	3 (2.83%)
Hispanic/Latino/a	3 (2.83%)
Employed	68 (64.15%)
College-education or higher	92 (86.79%)
Income of $50 000 or more	80 (75.47%)
Psoriasis characteristics
Psoriatic arthritis	25 (24.04%)
Duration of disease	18.60 ± 14.27
History of psoriasis medicationa
Topicals	32 (30.19%)
Biologics	40 (37.74%)
Phototherapy	39 (36.79%)
Oral systemic	24 (36.79%)
Current psoriasis medicationa
Topicals	55 (51.89%)
Biologics	50 (47.17%)
Phototherapy	24 (22.64%)
Oral systemic	11 (10.38%)
Self-reported affected areas at time of study examination
Nails	22 (22.75%)
Scalp	59 (55.66%)
Face	32 (30.19%)
Arms	60 (30.19%)
Trunk	44 (41.51%)
Breasts	16 (15.09%)
Groin	23 (21.70%)
Genitals	20 (18.87%)
Legs	75 (70.75%)
Hands	23 (21.70%)
Feet	25 (23.58%)
Self-reported visibility, range 1–7	2.98 (1.81)
Patient self-reported severity (in general)
Mild	34 (32.08%)
Moderate	43 (40.57%)
Severe	27 (25.47%)
Physician-reported body surface area %, mean (SD)	2.78% (4.68%)
Physician global assessment, range 0–5, mean (SD)	2.98 (1.81)
Patient adjusts behavior to hide psoriasis
Yes	49 (46.23%)
No	38 (35.85%)
Missing	19 (17.92%)

^aAdds up to more than 100% due to concomitant medications.

Anticipated Stigma

Approximately two-thirds of patients reported that, in response to seeing their psoriasis-affected skin, they anticipated others to stereotype them as “contagious” (66.98%, 95% CI: 57.18%−75.81%) and “unattractive” (66.0%, 95% CI: 56.20%−74.96%; Figure 1). A notable minority of patients also reported anticipation that others would socially avoid them. For example, 17.92% (95% CI: 11.16%−26.57%) of patients thought others would not want to date them, and 16.03% (95% CI:9.6%−24.43%) thought others would avoid shaking hands with them, in response to seeing their psoriasis lesions. About one-third of patients (28.30%, 95% CI: 19.98%−37.88%) thought their psoriasis lesions would elicit negative emotions such as “disgust” from others.

Figure 1.

Anticipation of negative stigma from others. The percentages of individuals who “agree” (4) or “strongly agree” (5) are shown. Item scores were averaged, with higher scores indicating that patients had a stronger anticipation of stereotypes (orange), social distance (blue), and emotions (gray) from other people.

Perceived Stigma

The mean score ± SD of the perceived stigma scale was 2.10 ± 0.70 (range 1–3.83). Approximately 39.62% (95% CI:30.25%−49.59%) reported the belief that others “stare at their skin disease” (Figure 2). Perceived stigma correlated significantly with anticipated overall mean scores of social distance (r = 0.51, P < .001) and of stereotype endorsement (r = 0.61, P < .001). A significant portion of patients (20.75%, 95% CI:13.49%−29.72%) reported feeling judged negatively by a physician due to their psoriasis. However, only 2.83% (95% CI:0.59%−8.05%) reported having this experience with a previous dermatologist.

Figure 2.

The percentages of individuals reporting general perceived stigma patients’ general perceived stigma (ie, the extent to which patients observed that others avoided them or treated them poorly because of their skin) was assessed with a 6-item validated survey, rated on a 1 to 4 scale, which a higher score indicating more negatively perceived stigma.

Correlates of Anticipated and Perceived Stigma

Linear regression analyses (Table 2) demonstrated that patient-reported generally severe psoriasis, compared to self-reported generally mild psoriasis was associated with greater anticipation of stereotype endorsement (b = 0.32, SE = 0.13, β = 0.47, P < .001), greater anticipation of social distance (b = 0.42, SE = 0.16, β = 0.72, P < .001), and greater perceived stigma (b = 0.23, SE = 0.15, β = 0.36, P = .017 Younger participants, compared to older participants, and participants with income less than $50 000 (vs greater than $50 000) anticipated more stereotyping and reported more perceived stigma from others (P values < .05). Longer duration of disease was also associated with greater anticipation of stereotype endorsement from others (b = 0.23, SE = 0.04, β = 0.09, P = 0.03). Physician-reported psoriasis severity as determined by body surface area affected and Physical Global Assessment score was not associated with any outcome.

Table 2.

Beta Coefficients From Regression Analyses Testing Predictors of Anticipated and Perceived Stigmatizing Attitudes in Patients With Psoriasis.^a

	Anticipated stereotype endorsement	Anticipated social distance	Perceived stigma
Age	−0.36b	−0.06	−0.30c
Female	−0.13	−0.05	0.10
Body mass index	−0.07	−0.07	0.05
White non-Hispanic/Non-Latino(a)	−0.05	−0.07	−0.12
College graduate or higher education	0.16	−0.06	−0.07
Income $50k or more	−0.32c	−0.07	−0.22d
Employed	0.01	−0.05	−0.02
Patient-reported disease as severe (generally)	0.33b	0.42b	0.23d
Duration of disease (deciles)	0.23d	0.10	0.12
History of biologic use	0.03	0.02	0.26c

^aContinuous variables were centered at their means.

^bP < .001

^cP < .01.

^dP < .05.

Psoriasis severity was reported as perceived severity over the entire time the patient has had psoriasis (mild, moderate, or severe).

Stigma Avoidance

Almost half (42.23%) of patients stated that they take measures to hide their psoriasis in their daily life. Over one-third of patients (35.85%, 95% CI: 26.77%−45.74%) reported that they would prefer having another stigmatizing disease, such as HIV or obesity, as their first choice disease over psoriasis.

Discussion

Stigma is prevalent among patients with psoriasis, as determined by the anticipation of future stigmatizing experiences (ie, social distancing or negative stereotyping), the perception of adverse treatment (ie, perceived stigma), and the extent to which patients avoid or prevent consequences of having a visible stigma.^29,30 Two-thirds of patients reported that, in response to seeing their psoriasis-affected skin, others would stereotype them as “contagious.” Approximately 1 in every 3 patients reported that others would experience negative emotions such as “disgust” in response to seeing their psoriatic lesions. Of note, the validated measure of perceived stigma significantly correlated with the measures of stereotype endorsement and social distance that were adapted for the present study. Almost half of the patients reported that they modify their behavior to hide their psoriasis in their daily life (ie, using mechanisms to avoid stressful situations). At least 1 in every 3 patients with psoriasis reported a desire to have another stigmatizing disease over psoriasis. Patient-reported severe psoriasis, compared to mild psoriasis, was associated with greater anticipation of negative stereotypes, social avoidance, and perceived stigma from others (P values < .05). Longer duration of psoriasis was associated with a higher expectation of being negatively stereotyped by others. It is possible that stigmatizing experiences accumulate the longer someone has psoriasis, leading to greater anticipated stigma in the future.

Physician-reported measures of disease severity such as body surface area affected and PGA score were not associated with any outcome. This may be attributed to the cross-sectional nature of the severity measures. However, this finding is consistent with previous literature that reported physician-assessed measures of psoriasis severity correlated poorly with patient-reported quality of life measures.^31,32

We note that participants in this study completed the same social distance scale, stereotype semantic scale, emotion ratings, and disease rank list as those completed by a layperson sample in a previous study.⁹ Patients with psoriasis anticipated more negative emotional responses to their visible lesions and stronger endorsement of negative stereotypes from the public than was reported by actual laypersons.⁹ Layperson responses may have been biased by social desirability pressures, leading them to underreport their stigmatizing attitudes. However, laypersons reported a greater desire for social distance than expected by patients, and less preference for having psoriasis (compared to other stigmatized diseases) than did patients with psoriasis, suggesting that social desirability bias may not have been strong enough to override genuine responses to seeing psoriasis lesions. Thus, while patients may overestimate some aspects of stigma against them due to their skin disease, they may underestimate the extent to which others may want to avoid them or may think that psoriasis is an undesirable disease. A significant minority of patients with psoriasis and laypersons chose other stigmatizing diseases (eg, HIV or losing a limb; Supplemental Figure 1) over having psoriasis. Altogether, these findings suggest that patients may have heightened anticipated stigma in relation to true layperson attitudes, yet their concerns also have validity with respect to how they are treated by others.

Our findings are similar to previous research that have found sociodemographic factors (eg, younger age) and disease-related variables (eg, longer duration of disease)³³ as predictors of anticipated and perceived stigma among patients with psoriasis. Social rejection, as reported by our participants were consistent with previous qualitative³⁴ and quantitative³⁵ studies. Finally, previous studies have shown that patients avoid social situations to avoid experiencing others’ negative reactions in response to their psoriasis lesions. The authors postulated that stress contributed significantly⁷ to disease impact and, in fact, even greater than the visibility of disease itself.⁷ Furthermore, the stress resulting from perceived stigma may be a trigger for psoriasis exacerbation,³⁶ and the relationship between stigma and psoriasis flares can become a vicious, perpetual cycle, highlighting the pervasiveness of stigma. Indeed, in studies of weight stigma, anticipated stigma, particularly, has been shown increase markers of cardiovascular reactivity (ie, higher blood pressure) and therefore contribute to cardiovascular disease.³⁷

This study is unique as it is the first to our knowledge to directly assess the extent to which patients expect others to respond to their psoriatic lesions. To our knowledge, this is the largest survey of stigma in US patients with psoriasis. Another strength of this study is that the outcome measures of anticipated social distance and stereotype endorsement correlated with a widely used, validated measure of perceived stigma that was developed for individuals with skin diseases, thus suggesting the validity and utility of the stigma measures that we adapted from other kinds of stigma measures for use in future studies. As with all observational studies, our study may be affected by limitations such as generalizability. It is possible that patients who experience stigma may be more motivated to seek treatment and achieve disease clearance, contributing to higher reports of anticipated and perceived stigma in our sample. Alternatively, previous literature supports an inverse relationship between perceived stigma and the likelihood of seeking treatment.³⁸ Our findings may not be representative of the general psoriatic population as we recruited patients from a single institution. Although we assessed how patients perceive others’ responses to their psoriasis, future studies are needed to assess self-stigma (ie, internalization of stigma), including the degree of agreement with negative stereotypes and the application of these negative societal attitudes to self in order to develop targeted strategies to reduce stigma.³⁹

In conclusion, there is a high prevalence of anticipated and perceived stigma reported by adult patients with psoriasis. 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. Future research may investigate the potential benefits of incorporating discussions of anticipated and perceived stigma into routine care visits for patients with psoriasis to improve quality of life.