Pediatric Study Reveals Link Between Skin Disorder Visibility and Stigma

Amy S. Paller, MD

Credit: Northwestern University Feinberg School of Medicine.

A new study underscores the significant impact of chronic skin disorders on children’s well-being, revealing an association between disease variability, severity, and increased stigma, prompting a call for comprehensive clinical approaches.

Although chronic skin disorders in children often lead to stigmatization, the extent of stigmatization from chronic skin disease needed to be further examined. Investigators sought to examine the degree of the stigma depending on the disease's visibility and severity, alongside its impact on the mental well-being and quality of life of affected children.

“Skin disorders are often regarded as less serious than other groups of disease by the public, insurers, and pharmaceutical industry,” wrote investigators, led by Amy S. Paller, MD, from the departments of dermatology and pediatrics at Northwestern University Feinberg School of Medicine. “However, a child or adolescent with a chronic skin disorder risks becoming the target for bullying, alienation, and feelings of reduced self-worth, leading to stigma.”

The team conducted a cross-sectional, single-visit study at 32 pediatric dermatology centers in the US and Canada from November 14, 2018, to November 17, 2021. The primary outcome was the extent of stigma along with child, caregiver, and physician-assessed disease visibility. The secondary outcomes included assessing the association between stigma and disease severity, reduced quality of life, depression, anxiety, and poor peer relationships.

Quality of life was measured with the Skindex-Teen, reporting physical symptoms of skin pain, burning/stinging, itching, effect on sleep, and skin bleeding, and through the 16 items on the psychosocial functioning subscale.

The sample included 1671 children aged 8 – 17 years with a chronic skin disease, as well as 1 parent. Of the children, more than half were female (57.9%) and White (56.4%), with a mean age of 13.7 years.

The most common physician-determined diagnoses were acne (22.8%), AD/eczematous disorders (22.5%), alopecia (11.3), and psoriasis (7.4%). Children also had rarer disorders such as ichthyoses (2.1%) and EB (1%). Half of the participants reported high disease visibility (56.4%) and moderate disease severity (50.5%).

The skin disorders with the greatest percentage of children reporting high visibility were acne (74.5%) and dermatomyositis/lupus (75%). The disorders with the greatest reported severity were hyperhidrosis (55.6%), EB (33.3%), and AD (32.4%).

The team observed stigma scores significantly differed based on disease visibility and severity. Among children with chronic skin disorders—particularly acne, atopic dermatitis, alopecia areata, and vitiligo—only 27% had T scores < 40 indicating minimal or no stigma and 43.8% had a T score of ≥ 45 revealing moderate stigma.

Investigators saw stigma scores were associated with reduced quality of life (Spearman, P = .73), depression (P = .61), anxiety (P = .54), and poor peer relationships (P = -.49). However, the association did not reach significance.

The findings suggest stigma was associated with bullying (Cohen d = .79). Bullying took place primarily at school (94%) and was less frequent somewhere else in public such as parks, camps, or stores (12%), online (5%) or at home (4%).

Additionally, girls reported greater stigma than boys (Cohen d = .26). Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety.

Investigators noted depression and anxiety were significantly associated with stigma for most skin disorders, such as hidradenitis suppurativa (depression, r = 0.67; anxiety, r = 0.70; both P < .001). However, hyperhidrosis had a weak association between anxiety and depression (depression, r = 0.31; anxiety, r = 0.34).

Investigators highlighted several limitations, including needing more studies of children from middle-income and lower-income countries and the lack of validated severity assessment tools. Additionally, the study needs to be replicated with a larger sample.

Overall, investigators highlight physicians treating children with chronic skin disease should be aware of potential stigmatization.

“While successfully treating the underlying skin disease is a goal, other tools to diminish stigma include discussions with teachers; educating about the child’s disorder in the classroom; active discussions with the child about handling, recognizing, and managing bullying; and managing the psychosocial impact of stigma (eg, referral to psychiatry/psychology for interventions),” investigators wrote.

Programs exist for other chronic diseases, such as mental illness, genetic disorders, and HIV to help the development of resilience. Group sessions can be useful in identifying coping strategies, strengthening relationships, and creating a healthy living environment to reduce stigma.

“Key strategies for tackling perceived stigma include becoming aware of self-stigmatizing thoughts and learning to change these feelings and behaviors,” investigators concluded.

References

^{Paller AS, Rangel SM, Chamlin SL, et al. Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders. JAMA Dermatol. Published online April 24, 2024. doi:10.1001/jamadermatol.2024.0594}