Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Abstract

Importance: Chronic skin disorders in children frequently are visible and can cause stigmatization. However, the extent of stigmatization from chronic skin disease and association with mental health needs further study.

Objective: To examine the extent of stigma, dependence on disease visibility and severity, and association with mental health and quality of life (QOL) in chronic pediatric skin disease.

Design, setting, and participants: A cross-sectional, single-visit study was conducted at 32 pediatric dermatology centers in the US and Canada from November 14, 2018, to November 17, 2021. Participants included patients aged 8 to 17 years with chronic skin disease and 1 parent.

Main outcomes and measures: Using the Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Stigma-Skin, the extent of stigma with child-, caregiver-, and physician-assessed disease visibility (primary outcome) and severity was compared, as well as reduced QOL (assessed by Skindex-Teen), depression, anxiety, and poor peer relationships (PROMIS child and proxy tools) (secondary outcomes).

Results: The study included 1671 children (57.9% female; mean [SD] age, 13.7 [2.7] years). A total of 56.4% participants had self-reported high disease visibility and 50.5% had moderate disease severity. Stigma scores significantly differed by level of physician-assessed and child/proxy-assessed disease visibility and severity. Among children with chronic skin disorders, predominantly acne, atopic dermatitis, alopecia areata, and vitiligo, only 27.0% had T scores less than 40 (minimal or no stigma) and 43.8% had at least moderate stigma (T score ≥45) compared with children with a range of chronic diseases. Stigma scores correlated strongly with reduced QOL (Spearman ρ = 0.73), depression (ρ = 0.61), anxiety (ρ = 0.54), and poor peer relationships (ρ = -0.49). Overall, 29.4% of parents were aware of bullying of their child, which was strongly associated with stigma (Cohen d = -0.79, with children who were not bullied experiencing lower levels of stigma). Girls reported more stigma than boys (Cohen d = 0.26). Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety.

Conclusions and relevance: The findings of this study suggest that physician assessment of disease severity and visibility is insufficient to evaluate the disease impact in the patient/caregiver. Identifying stigmatization, including bullying, and tracking improvement through medical and psychosocial interventions may be a key role for practitioners.

Figure 1.. Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Pediatric Stigma (PPS-Skin) T Scores by Skin Disease Condition in 9 Skin Disorders With Greatest Number of Participants or Highest Scores

Disorders with the greatest numbers of participants or highest mean T scores for stigma are included. T scores for the 22-item PROMIS PPS-Skin measure for each patient were determined and plotted. The mean values are all within the mild to moderate range of stigma for children with chronic diseases. Of the 1671 enrolled children, 1670 completed the full stigma questionnaire.

Figure 2.. Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Pediatric Stigma (PPS-Skin) T Scores by Skin Disease Condition in 7 Other Skin Disorders

T scores for the 22-item PROMIS PPS-Skin measure for each patient were determined and plotted. Disorders with the greatest numbers of participants or highest mean T scores for Stigma are included. The mean values are all within the mild (≥40) to moderate range of stigma for children with chronic diseases. Of the 1671 enrolled children, 1670 completed the full stigma questionnaire.

Figure 3.. Extent of Child Stigma Differentiates Levels of Visibility and Severity of Chronic Skin Diseases

A, Visibility was self-assessed as not visible (no; n = 208), barely covered by clothing (partial; n = 488), or very visible (high; n = 943). Comparison between not visible and barely covered, P < .001; comparison between barely covered and very visible, P < .001; and comparison across the 3 levels, P < .001. B, Severity was self-assessed as mild (n = 427), moderate (n = 844), or severe (n = 356). Comparison between mild and moderate, P < .001; comparison between moderate and severe, P < .001; and comparison across the 3 levels, P < .001. In these boxplots, the horizontal line is the median and the vertical lines are the IQR. PPS-Skin indicates PROMIS Pediatric Stigma-Skin.

Figure 4.. Spearman ρ Correlation Coefficients Across the Domains and Variables

T scores for various domains were correlated with each other and with scores for severity, visibility, and quality of life. Outlined in blue are the correlations of the child’s stigma score with other domains. Outlined in purple are the correlations of the child-determined severity and visibility with proxy and physician scores, as well as the correlation of the child’s self-determined severity vs visibility. Correlations of ρ = 0.2 to 0.39 are considered weak, 0.4 to 0.59 moderate, 0.6 to 0.79 strong, and greater than or equal to 0.8 very strong. A more strongly negative correlation for peer relationship represents a poorer relationship. 95% CIs for each correlation are reported in eTable 5 in Supplement 1. C indicates child; MD, physician; and P, proxy. ^aP < .001. ^bP < .01. ^cP < .05.