Damian Sendler: Disfigurement and disability are common outcomes of psoriasis, a chronic, recurrent immune-related skin disease. As a result of the stigma associated with psoriasis and the general public’s limited knowledge of dermatology, people with psoriasis experience poorer mental health, a lower quality of life, and less effective treatment options. This review summarized the frequently used questionnaires and scales to evaluate stigmatization in patients with psoriasis, and recent advances on this topic. Feelings of Stigmatization Questionnaire, Questionnaire on Skin Complaints, and 6-item Stigmatization Scale have all been commonly used in research. It was found that these questionnaires helped researchers better understand the connections between a patient’s psoriasis and their psychiatric health conditions, quality of life, and feelings of social stigma. In order to combat the stigma associated with psoriasis, policymakers, dermatologists, psychologists, psychiatric researchers, and patients must all work together. Other areas of research could focus on these existing topics as well as other areas like non-patient stigma, biologics, and how to deal with it; these are just a few ideas that could be pursued in the future.
Damian Jacob Sendler: characterized by red, scaly plaques with distinct borders (1–4). Psoriasis is now recognized as a systemic disease rather than just a skin condition (5). Other organs, such as the joint (6) and cardiovascular system, may be affected by psoriasis (7). There is also an increased risk of psychiatric disorders, such as depression, anxiety (eight), bipolar mood disorder (nine), personality disorder (ten), and cognitive impairment (12). (11). Patients with psoriasis may be subjected to a significant physical and psychological burden, which can have a negative impact on their health, personal lives, and professional careers (12). Psoriasis can have a significant negative impact on a person’s physical, emotional, and social well-being (13, 14).
Dr. Sendler: Discrediting perceptions of a person’s biology or social status are assigned to them in the process of stigmatization, making them stand out from the rest of the population (15, 16). Many people with psoriatic disease and other dermatologic conditions feel stigmatized because of their visible skin lesions and a lack of public awareness about the diseases. Other cultural or social factors may also contribute to stigmatization (15, 17). Because of their “unclean skin” and public concerns about infectivity, Susskind and McGuire reported in the 1950s that psoriasis patients might be subject to curiosity, hostility, and disgust from the public (18). Patients with psoriasis could benefit from increased awareness of the disease’s status as a non-infectious condition (19). More than 8,000 people with moderate-to-severe psoriasis from 31 countries participated in a global survey in 2018. (20). Psoriasis-related discrimination and humiliation had a negative impact on the respondents’ work, personal relationships, and health status, according to 84 percent of the participants. There may be social and psychological difficulties for psoriasis patients, especially when they have to expose their bodies (21). Patients with psychological distress may lose hope and feel powerless in the face of their illness, which can negatively affect their treatment outcomes (21, 22). Stigmatization, sociodemographic characteristics, disease-related variables, and psychiatric disorders in psoriasis patients have been studied more and more in recent years. Patients with psoriasis may be stigmatized to varying degrees, depending on the type of questionnaire used (16, 23).
A survey of 100 psoriasis patients conducted in 1989 by Ginsburg and Link, using the “Feelings of Stigmatization Questionnaire,” uncovered six distinct aspects of stigma (24). Thirty-three questions form the basis of this disease-specific questionnaire. “Anticipation of rejection, feeling flawed, sensitivity to other people’s attitudes, guilt and shame, secrecy, and positive attitudes” were the six dimensions. A lack of compliance and worsening status can result from stigmatization. Stigmatization of psoriasis patients has serious consequences for their well-being as well as for their treatment in the clinic.
To measure stigmatization in psoriasis patients, researchers have employed the Feelings of Stigmation Questionnaire. Psoriasis patients are more likely than the general population to encounter gross rejection because of their skin condition, according to research conducted in 1993 by Ginsburg and Link, primarily from the gym, pool, hairdresser, or place of employment (25). Rejection can cause a person to feel stigmatized, which can have negative consequences on their emotions and careers. Stigmatization was found to be linked to depression in psoriasis patients who completed the Feelings of Stigmation Questionnaire and Beck Depression Inventory (26). According to the Feelings of Stigmatization Questionnaire (FSFQ), 115 psoriasis patients were found to be more stigmatized by lesions on the back of their hands than by overall disease severity (12). The fear of infection, especially when shaking hands, being touched, or touching the same objects, could be one explanation for this association. It was found that stigmatization predicted quality of life worse than any other analyzed variable. Psoriatic patients’ stigmatization and quality of life were examined by Jankowiak and coworkers in 2020. (27). Feelings of Stigma Questionnaire (33 items) and Dermatology Life Quality Index (DLQI), respectively, were used to measure stigma and life quality. Various domains of stigmatization were found to be linked to gender, age, and quality of life, according to the researchers.
Questionnaire on Skin Complaints was developed by Schmid-Ott and colleagues in 1996, based on the Feelings of Stigmatization Questionnaire ( 28). It was used to identify the various dimensions of stigma in 187 psoriasis patients. – Self-esteem, retreat, rejection, composure, and concealment were identified as five factors. Skin disease patients with psoriasis and other skin disorders could benefit from filling out this survey to gauge their feelings of social stigma. The same research group also evaluated its validity and concluded that it was valid and reliable in evaluating stigma feelings in atopic dermatitis and psoriasis patients (29). After the first use of this questionnaire in 2003, researchers began using a shorter version of it for the first time (30). Cronbach’s alpha of 0.7 indicated that the 23-item short form was more cost-effective and more reliable than the longer version. Rejection, self-esteem issues, and composure were all found to be correlated with factors in the questionnaire based on factor analysis. Patients with psoriasis and atopic dermatitis had a moderately high correlation between the Questionnaire on Experience with Skin Complaints and the DLQI.
The Questionnaire on Experience with Skin Complaints, a dermatology-specific instrument, has also been frequently used to evaluate stigmatization in psoriasis patients. A study published in 2013 by Böhm and colleagues looked at the relationship between disease severity, gender, stigma, and quality of life (31). The stigmatization levels of 381 patients were measured with the Questionnaire on Experience with Skin Complaints. Skin-related quality of life was negatively affected by psoriasis severity, which was found to be associated with greater stigmatization. Both men and women were subjected to the same levels of stigmatization, but the effects on men and women were vastly different. When Bangemann and colleagues adopted the short version of the Questionnaire on Experience with Skin Complaints in 2014, they found that stigmatization was a significant predictor for quality of life (8). In addition, the best predictor of depression and anxiety was one’s overall level of well-being.
Skin disease stigmatization was first measured in 2003 using a Likert scale with the following six items: not attractive because of skin disease, others staring at skin disease, others uncomfortable touching me because of skin disease, others believing that skin disease is contagious, others avoiding me because of skin disease, others occasionally making annoying comments about skin disease (32). In patients with psoriasis and atopic dermatitis, Cronbach’s alpha was over 0.8, indicating good internal consistency for this six-item stigmatization scale. Perceived helplessness was found to be the strongest predictor of stigmatization in both psoriatic and atopic dermatitis patients, according to a study published in the journal Psoriasis. There are two drawbacks to be aware of. It’s possible that self-report measures underestimate the stigmatizing effect of clinical status. Aside from that, psychological factors that may be relevant to long-term skin conditions should be taken into account as well
Damian Sendler
These six-item scales are dermatology specific, and have been commonly used with the Feelings of Stigmatization Questionnaire and the Experience with Skin Complaints Questionnaire, respectively. Stigmatization questionnaires and other assessments, such as the Psoriasis Area and Severity Index (PASI), Acceptance of Illness Scale (AIS), Satisfaction with Life Scale (SWLS), and DLQI, were also used to examine disease severity, quality of life, and feelings of stigmatization (33, 34). Most patients with psoriasis reported feeling stigmatized because of their condition, and face involvement appeared to be the only independent factor that influenced the level of stigmatization (33). In a study of psoriasis patients, akuta and colleagues looked at the links between the location of skin lesions and symptoms of depression, social anxiety, body dysphoria, and a sense of stigma (35). Psoriasis has been linked to poor mental health in a number of areas of the body that have been labeled as “sensitive.” For this study, researchers examined the level of stigmatization of 166 patients with plaque psoriasis, and found a correlation between the level of stigmatization and other variables (36). Males, rural residents, the unmarried, and those with a longer history of illness were all more likely to be stigmatized than females. A study by Kowalewska and colleagues in 2021 will examine how severe psoriasis affects patients’ quality of life and feelings of stigmatization (37). People’s quality of life was determined by their disease severity, and stigmatization levels were strongly correlated with their PASI scores, according to researchers.
Among Indian patients with vitiligo and psoriasis, a cross-sectional study conducted in 2011 examined the stigma they faced (38). Stigma prevents people from participating in social activities, which is a major problem. For this study, researchers used the Participation Scale, which has been successfully used in programs aimed at reducing social stigma and promoting social integration (39). Patients with psoriasis were found to have more limitations in their daily lives, with 28 percent taking part in as little as possible in domestic and social activities and 2.7% having restrictions of the most extreme kind.
Damian Jacob Markiewicz Sendler: Initially used in 2015, the psoriasis Internalized Stigma Scale was applied to patients with the condition (40). As a result of internalized stigma, people tend to internalize negative feelings and beliefs about themselves, which lowers their self-esteem and happiness in life and increases their risk of depression and suicide (41). The Cronbach’s alpha of the Psoriasis Internalized Stigma Scale was found to be 0.89. The Dermatology Quality of Life Index (DQoL) scores were strongly correlated with the Psoriasis Internalized Stigma Scale (r=0.726). Using the Psoriasis Internalized Stigma Scale, a multi-center, cross-sectional study of 1,485 psoriasis patients was able to identify the factors influencing internalized stigma ( 41). There was a strong correlation between disease severity, visible body parts (such as the genital area or folds or joints), poor quality of life, negative views of general health, and psychological illnesses. Researchers from several different institutions compared their findings on the internalized stigma of children with psoriasis (42). Internalized stigma in pediatric patients was linked to a lower quality of life, health, and mental health issues. – Psoriasis itself, rather than disease severity or involvement of visible body parts, genital area, or folds, was the most important factor in the development of internalized stigma in pediatric patients.
Patients with psoriasis who completed the Perceived Stigmatization Questionnaire in 2021 reported higher levels of stigmatization than those who completed the questionnaire at an older age or with less severe disease, as well as more frequent scratching and dysmorphic self-consciousness (43). In a study of burn survivors, Cronbach’s alpha 0.93 confirmed the reliability of the Perceived Stigmatization Questionnaire, which is a 21-item, five-point Likert scale with six categories (never, almost never, sometimes, often, always) (44).
Immune-mediated skin disease psoriasis is a chronic and recurrent disfigurement and disability for patients (1, 45–48). As a result of the lack of public awareness of dermatology, psoriasis patients are often stigmatized in their work and personal lives, which can have a negative impact on their quality of life and even cause mental illnesses such as anxiety and depression. The stigmatization of psoriasis patients has been assessed using a variety of questionnaires over the past few decades (16). Some of the most important findings in the study of psoriasis stigma have come from the use of questionnaires like the Stigmatization Questionnaire, the Questionnaire on Personal Experience with Skin Complaints, and the 6-item Stigmatization Scale.
Damian Jacob Sendler
Sociodemographic variables, disease-related variables, and personality traits were all found to influence the stigmatization level of psoriasis patients. Some studies (27, 49) found a link between gender stigmatization and certain sociodemographic factors, while others found no such link (26, 34). People with psoriasis were more likely to be stigmatized if they had a lower level of education (50), lacked professional knowledge (51), or lived in the countryside (52). The public’s understanding of psoriasis, particularly its non-infectious nature, could help alleviate the disease’s social stigma and increase patients’ acceptance (53). When it comes to disease-related variables, onset age was found to be linked to feelings of stigmatization in patients, and those with an early-onset age were more vulnerable (24, 54, 55). Those with psoriasis in their early adulthood were more likely to suffer from social stigma because they were still establishing their social networks and making contact with a wider range of people (55). Consequently, physicians should pay more attention to patients under the age of 18. Furthermore, some studies found an association between stigmatization and the distribution and severity of skin lesions (12, 31, 35, 50). Stigmatization of patients with skin lesions in the most visible areas was associated with greater social exclusion and a lower quality of life. As a result, when treating psoriasis, the location and severity of the lesions, as well as the patient’s overall health, must be taken into account. Type D personality was also linked to stigmatization, possibly as a result of the suppressed emotions and behaviors brought on by the fear of being rejected (50). As a result, type D personality testing may be required to gauge the level of stigmatization experienced by the patients. Type D personality The proper predictors provided a framework for patients at high risk of stigmatization, promoting screening and intervention procedures for further implementation of tailored evidence-based treatment (50).
Damien Sendler: Psoriasis stigmatization studies involving non-patient populations are now common. Psoriasis awareness in Germany was studied by Sommer and colleagues in 2018. (56). Psoriasis was considered communicable by only 9% of the people polled, and 27% of those polled said they wouldn’t have a personal relationship with someone who had the condition. Psoriasis sufferers were also assessed for prejudice and stigmatization in the general German population by the same group (57). By a wide margin, those afflicted with the condition were seen as disadvantaged and disgusting. Psoriasis sufferers were generally unwelcome in the study, and some participants thought they should “take better care of themselves.” In some cases, biases arose because of factors such as one’s race, gender, or education level. Psoriasis stigma was examined by Pearl and colleagues in 2019 as they compared the attitudes of the general public and medical students to the disease (51). In their surveys, medical students found fewer stigmatizing attitudes than the general public, which suggests that a public education campaign about psoriasis could help reduce the stigmatization of those who suffer from the disease.
For mild psoriasis, topical agents are the best option, while systemic treatments are the best option for moderate to severe cases. According to Nijsten and colleagues in 2005, four traditional systemic treatments for psoriasis were evaluated for patient satisfaction (58). Fewer than 40% of those who tried the four treatments said they were happy with their choices. Dermatologists began to develop new pathogenesis-based therapies, such as various biologics, as a result of a better understanding of pathogenesis. A number of biologics have been shown to be safe and effective in the treatment of psoriasis, particularly in moderate to severe cases (13, 59, 60). It is recommended by the American Academy of Dermatology-Nationwide Plaque PD Foundation guidelines that biologics should be used as a first-line treatment for moderate to severe plaque PD. As a result of biologics’ introduction, patients’ adherence to treatment and satisfaction with treatment increased, and their quality of life improved (62). As reported by Tennvall and colleagues in 2013, patients who received biological treatment for at least 12 months had the highest satisfaction and lowest DLQI scores compared to those who received topical treatment and those who received both systemic and/or biological treatment (62). In 2015, Schaarschmidt and coworkers evaluated how satisfied patients were with four different treatment approaches (63). Participants who received biologics reported the highest levels of satisfaction on the Treatment Satisfaction Questionnaire for Medication, with ustekinumab receiving the highest score. In 2018, Ichiyama and colleagues found that treatment satisfaction was correlated with disease severity and quality of life impairment (61). Biologics improved the skin condition and quality of life of patients, whereas non-biologics did not, according to the results of the study. In patients with psoriasis, the use of biologics is likely to reduce the level of stigma they feel as a result of their disease’s severity, stigma, and impact on their quality of life (31). Biologics’ impact on psoriasis patients’ self-perception is an area that will require additional investigation in the future.
The stigmatization of psoriasis should be addressed, and patients should receive the psychological and social support they need. A subset of psoriasis patients was studied to see if stress had any effect on their disease’s onset or progression (64). The physical and psychological aspects of psoriasis management must be taken into consideration. In addition to medication, psoriasis treatment includes relaxation techniques, cognitive-behavioral therapy, and support groups for sufferers of the condition (65). To combat psoriasis patients’ social stigma, dermatologists and psychiatric specialists should work together. For visible chronic skin diseases, Germen has implemented a “Destigmatization” program based on the WHA resolution (66). In regions where psoriasis is prevalent and stigmatized, such activities are of great importance and require the cooperation of policymakers, dermatologists, psychologists, psychiatrists, researchers, and patients (67).
