Internalized Stigma in Pediatric Psoriasis: A Comparative Multicenter Study

The skin and adnexa, as significant features of our external appearance, contribute to our social standing. Diseases localized to the visible or special body parts (e.g. genitalia) can lead to significant psychosocial problems, including stigmatization. Psoriasis, being the most common systemic inflammatory disease, causes psychosocial morbidity and cumulative disability over a patient's lifetime1. Psoriatic lesions often affect visible parts of the body that may discriminate the individual from others, in other words, stigmatize the patient2. Internalized stigma, another dimension of the stigma, is the feeling of stigma experienced by the individual even though he or she is not stigmatized by the society. The individual accepts negative stereotypes about the illness created by society and withdraws himself/herself from society with emotions such as worthlessness and shame. The patient presumes that other people have a reaction towards his/her illness and eventually withdraws him/herself from the social life ending up with decreased self-esteem and life-satisfaction, increased depression and suicidality as well as difficulty in coping with the illness. The internalized stigma may affect the quality of life and treatment response negatively3.

Current knowledge on internalized stigma in patients with psoriasis is extremely limited. Our recent study1 has shown that psoriasis patients experience high levels of internalized stigma, which is associated with disease severity, poorer quality of life, negative perceptions of general health and psychological illnesses. The internalized stigma was more pronounced in patients with involvement of visible body parts, genital organs, folds or joints. In line with our findings, a recent study by van Beugen et al.4 who investigated the predictor variables for perceived stigmatization using 6-item subscale of the Impact of Chronic Skin Disease on Daily Life Questionnaire revealed 73% of patients to experience some degree of stigmatization. The authors reported an association with a higher impact on daily life, lower education, higher disease visibility, severity, and duration, higher levels of social inhibition and having a Type D personality (personality composed of two traits: negative affect and social inhibition; experiencing negative emotions and abstain from sharing these emotions with others due to anxieties concerning their potential response and fears over how they will be perceived)5, 6. Since both studies focused on internalized stigma in adult psoriasis patients, data on internalized stigma in the pediatric group was lacking. Therefore, we aimed to investigate the internalized stigma state in pediatric psoriasis patients and to determine whether there are differences according to factors affecting internalized stigma compared to adult psoriasis patients.

This multicenter, prospective cross-sectional, the comparative study included 125 pediatric (55 female, 70 male; mean age±standard deviation [SD], 14.59±2.87 years) and 1,235 adult psoriasis patients (577 female, 658 male; mean age±SD, 43.3±13.7 years) from 18 study centers from different geographic regions of Turkey between 2014 and 2016. In order to ensure homogeneous distribution of patients in the centers, the ratio of pediatric/adult patients taken from each center was planned to be 1/10. This study used some of the questionnaires to determine internalized stigmatization in psoriasis, and part of this data has been used in a previous article1. The ages of pediatric psoriasis patients ranged from 10 to 18 years. Patients who did not have any previously diagnosed psychiatric disease and willing to participate in the study were included. Informed consent was obtained from all the patients or his/her guardians, and the study was conducted according to the Declaration of Helsinki Principles. The study was approved by the Ethics Committee of Akdeniz University School of Medicine (no. 70904504/215). The sociodemographic characteristics of the patients and other parameters, which may influence internalized stigma and quality of life (age, sex, duration of disease and age at onset, history of psoriasis in the family, comorbid diseases, income level, education level, previous hospitalization for her/his illness, active treatment during the study) were recorded. The subtype of psoriasis has been defined and body mass index (BMI) was calculated. Active involvement of scalp, face, hands, genital area, folds (inverse psoriasis), fingernails, and/or joints were recorded. Nail Psoriasis Severity Index (NAPSI; in all fingernails) was calculated. Physician's Global Assessment (PGA) has been used as an alternative severity scale when Psoriasis Area Severity Index (PASI) did not function well (palmoplantar plaque psoriasis [PP], inverse psoriasis [IP], palmoplantar pustular psoriasis [PPP]). PGA was used to assess the most severely involved hand, foot or folded areas.

The mean age of the pediatric patient group was 14.59±2.87 years (10~18 years) and the mean age at onset of the disease was 9.68±4.1 years (1~17 years). The mean age of the adult patient group was found to be 43.34±13.7 years (19~85 years) and the onset age of the disease, 29.96±14.67 years (1~84 years). Male patients were 56.0% of all pediatric patients, and 35.2% of them had a family history of psoriasis. Chronic plaque psoriasis (80.0%) was the most common psoriasis type. PHS score was defined as “bad” in 45.6% of all patients. Only 3.2% of the patients were receiving local and/or systemic psoriasis treatment during the study. The rest of the socio-demographic and clinical features of pediatric psoriasis patients are presented in Table 1. Male patients were 46.7% of adult patients, and 34.1% of them had a family history of psoriasis. Chronic plaque psoriasis (73.4%) was the most common psoriasis type. PHS score was defined as “bad” in 59.2% of all patients. During the course of the study, 85.7% of the patients were receiving local and/or systemic psoriasis treatment(s).

Table 1
Sociodemographic and clinical characteristics of the pediatric psoriasis patients

• Click for larger image
• Click for full table
• Download as Excel file

There was no significant difference in the mean values of PISS between pediatric and adult psoriasis patients (58.48±14.9 vs. 60.6±15.0, respectively; p=0.13). The lowest value among the five subscales of PISS was the perceived discrimination whereas the highest value belonged to stigma resistance in pediatric patients. In the adult patients, the lowest value belonged to the perceived discrimination subscale, while the highest value belonged to the subscale of stereotype endorsement. Of the PISS subscales, stigma resistance in the pediatric patients (13.4±3.9, 11.9±3.2, p=0.01), and alienation (12.9±4.4, 11.7±3.9, p=0.01) and stereotype endorsement (13.4±3.9, 12.7±4.2, p=0.04) in adult psoriasis patients were significantly higher when compared with each other (Table 2). When we evaluated the relationship between mean PISS scores and sex, there was no significant difference in pediatric (female, 56.1±13.2; male, 60.3±16.1; p=0.121) and adult patients (female, 60.1±15.0; male, 61.1±15.0; p=0.296).

Table 2
PISS subscales in pediatric and adult psoriasis patients

• Click for larger image
• Click for full table
• Download as Excel file

To evaluate the criterion validity of PISS, the relationships between PISS and DLQI, PASI, and BSA were examined. In the pediatric patient group, a statistically significant correlation was found between the mean values of PISS and DLQI (r=0.423, p=0.001). However, there was no statistically significant correlation between the PASI (5.2±5.4) and PISS values (r=0.122, p=0.192). There was a weak but statistically significant relationship between BSA (9.6±8.1) and PISS only on the alienation subscale (r=0.207, p=0.03). In the adult patient group, we also observed a significant positive correlation between PISS (13.3±17.1) and DLQI values (r=0.418, p=0.001). There was no significant difference between pediatric psoriasis and adult psoriasis patients in terms of DLQI (10.4±8.9 and 11.2±8.9, p=0.36, respectively). Unlike pediatric patients, significant differences were also found between mean total PISS values and PASI (r=0.214, p=0.001) and BSA (r=0.233, p<0.01) in adult patients (Table 3).

Table 3
Correlation coefficient between PISS subscales and DLQI, PASI, BSA, and GHQ-12 in pediatric and adult psoriasis patients

• Click for larger image
• Click for full table
• Download as Excel file

A statistically significant correlation was found between GHQ-12 and mean total PISS values (r=0.342 p=0.01), BSA (r=0.100, p<0.001) and DLQI (r=0.306, p<0.001). There was no significant difference between pediatric psoriasis and adult psoriasis patients in terms of GHQ-12 (2.7±2.3 and 2.6±2.5; p=0.79, respectively) (Table 3).

When the PHS were assessed, the mean PISS scores of those patients with a PHS of “worse than good” were significantly higher than that of those with a PHS of “good” in both pediatric (62.4±13.7 vs. 55.5±15.1; p=0.007) and adult patients (64.3±15.0 vs. 55.2±13.4; p=0.001). Similarly, the mean DLQI score of those patients with a PHS of “worse than good” was found to be significantly higher than that of those with a PHS of “good” in both pediatric (13.4±8.0 vs. 8.5±7.0; p=0.003) and adult patients (12.9±8.5 vs. 8.7±9.1, p=0.001).

There was no significant relationship in terms of scales used in the study when the pediatric patients were compared to each other according to the different age groups (10~14 vs. 15~18).

Significantly higher PISS scores were observed in the group of patients with low-income level (patients whose monthly income do not cover their expense) in both pediatric (63.4±14.1, 57.2±14.7, p=0.03) and adult patients (63.3±15.7, 58.7±14.3, p=0.01). There was no significant difference in both groups (p=0.82).

No significant correlation was found between the mean disease duration (4.8±3.2 years) and mean PISS values in the pediatric patients (r=0.29, p=0.749). However, there was a weak but significant relationship between the mean duration of illness (13.3±11.1) and mean PISS values in adult patients (r=0.077, p=0.008). When the relationship between the history of psoriasis in the family and mean PISS values was evaluated, no significant difference was found in either group. A weak but statistically significant relationship was found between BMI and mean PISS values in the pediatric patient group (r=0.181, p=0.04), however, there was no similar relationship in adult patients (r=0.046, p=0.118).

When we evaluated the relationship between psoriasis clinical subgroups and the mean total PISS score in pediatric patients, psoriasis vulgaris patients showed significantly higher PISS values than guttate psoriasis patients (58.9±15.0, 56.9±14.4, p=0.042, respectively). In adult patients, mean PISS values were significantly higher in erythrodermic psoriasis (75.1±11.8) and generalized pustular psoriasis (70.2±11.6) than guttate psoriasis (56.1±14.3) and palmoplantar psoriasis (56.4±15.2, p<0.05).

The mean PISS score in patients with nail involvement in pediatric patients was not statistically significantly different from those without nail involvement. Similarly, there was no statistically significant difference between patients with and without involvement in other visible areas of the body, such as the scalp, face, and hand. There was no significant difference between patients with IP and genital area involvement and those without. On the other hand, the mean PISS values of adult patients with the active scalp, face, hand, genital organs and fingernails and IP patients were significantly higher than those without (Table 4).

Table 4
Relationship of mean Psoriasis Internalized Stigma Scale (PISS) with psoriasis localizing on the visible parts of body, nail, genital area or mucosa, inverse and articular psoriasis in pediatric and adult psoriasis patients

• Click for larger image
• Click for full table
• Download as Excel file

In this multicenter study, comparing 125 pediatric and 1,235 adult psoriasis patients, we found high levels of internalized stigma state in the pediatric group showing a parallel course with the poor quality of life, general health status, and psychological disorders. These findings are concordant with two previous studies which included only adult psoriasis patients1, 4. In addition to causing significant psychosocial impairment, internalized stigma has negative effects on the utilization of health care and treatment compliance, subsequently increased disease severity16, 17. Therefore, it can be proposed that internalized stigma may have an effect on disease severity in psoriasis patients. However, in pediatric psoriasis patients, unlike adults, there was no relationship between high levels of internalized stigma and the severity of the disease. This finding may have a few explanations. Having a chronic disease which can be perceived by others may suffice a child to develop significant stigmatization independent from severity. The main cause of stigma could be due to multiple hospital admissions companied by parents.

Another interesting finding in our study was that besides extensiveness and/or severity of psoriasis, the involvement of visible body parts, genital area or folds were not found to be related with the high levels of internalized stigma in pediatric psoriasis patients. Regarding the mean age of our pediatric group, this finding may be explained by the lack of importance of genitalia involvement in sexually inactive young children. Also, pediatric cases may have better motivation for the use of medications because of relatively short disease duration compared to adults. In fact, adults may get tired of using medications on long-term basis18.

We did not find a significant correlation between mean disease duration and PISS in the pediatric patients, while there was a significant relationship in the adult patients. As expected, the duration of the disease is longer in adult patients (13.3±11.1 vs. 4.8±3.2). This result is consistent with our previous study, and the internalized stigma increases as the disease duration increases1.

We also observed some differences in the PISS subscales. Alienation and stereotype endorsement were significantly higher in adult patients. We can propose that, similar to the society, adult psoriasis patients also have some prejudice about the disease, leading to internalized negative stereotype judgments of the society for themselves. On the other hand, stigma resistance subscale was significantly higher in the pediatric group. In contrast to the other four subscales, the resistance to stigma subscale assesses the individual's ability to cope with illness and resistance to stigmatization. These findings may implicate pediatric cases to be insufficient for developing coping strategies. As internalized stigma may cause a vicious cycle, reducing patients' resistance to stigmatization, management of pediatric psoriasis patients may include educational approaches focusing enhancement of coping strategies and diminishing stigmatization. Such programs may reduce the level of internalized stigma and provide better compliance and effective use of healthcare. It can be speculated that such an approach may be even more effective in pediatric patients, which already have a higher resistance to stigmatization than the adult ones.

DLQI is a valid and reliable scale for psoriasis patients and frequently used as a major criterion for the introduction of systemic anti-psoriatic medications19. In our study, there was a strong positive correlation between the mean values of PISS and DLQI. This may indicate internalized stigma to influence the quality of life significantly. Thus, in addition to disease control, coping with stigmatization may be required for improvements in quality of life.

The mean PISS scores of those patients with a PHS of “worse than good” were significantly higher than that of those with a PHS of “good” in both pediatric and adult psoriasis patients. Similarly, there was a statistically significant correlation between the mean values of GHQ-12 and the PISS. All these results indicate that internalized stigma, general health, and mental illnesses tend to be parallel to each other, and this is compatible with the results in mental illnesses20. Taken together, these findings suggest that strategies for correcting internalized stigma may be effective in improving the quality of life and negative health outcomes in psoriasis patients. Studies conducted in psychiatric disorders17 support that such initiatives can positively affect treatment outcomes and quality of life.

In both groups, PISS scores were significantly higher in those with lower income. This, in accordance with prior studies, indicates that patients with higher income levels can cope better with internalized stigma and, in general, with illnesses17.

Our study also had some limitations. Because of the crosssectional study design, causality could not be established. Another general limitation of the study was the use of self-reported questionnaires. Also, we enrolled only patients who admitted to specialized centers. Therefore, this should be taken into account when generalizing the results of this study to the entire population. On the other hand, the major strengths of our study were to study a large nationwide sample of pediatric and adult psoriasis patients and to investigate internalized stigma with clinical and quality of life correlations.

In conclusion, our study shows that pediatric psoriasis patients internalize the negative stereotype judgments of the society for themselves which may be related with their quality of life, general health status, and psychological well-being. Therefore, it would be useful to develop strategies to ameliorate the internalized stigma and improve psychosocial health in psoriasis patients. The high levels of internalized stigma show a parallel course with the patient's self-efficacy and self-esteem reduction, which affects the patient's adherence to treatment negatively. The inclusion of educational approaches to the treatment plans as well as psychotherapy in selected patients that address the internalized stigma may be expected to increase treatment compliance. Educational studies conducted through written and visual media tools are of great importance in the fight against stigmatization in society.