Living with chronic skin disorders can take a dramatic toll on kids’ mental health, and physician assessment of disease severity and visibility doesn’t fully capture the extent of the disease’s impact, a new study shows.
Identifying stigmatization, including bullying, can help doctors get a better handle on how the skin disease is affecting a patient and their family.
In a large cross-sectional group of almost 1,700 children aged 8 to 17 with a variety of common to rare skin diseases, 73% reported at least mild stigma, and stigma was significantly increased in many children.
Researchers used the Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Stigma-Skin to determine if the extent of stigma correlated with child-, caregiver-, and physician-assessed disease visibility. Key secondary outcomes were comparing child-assessed stigma scores with disease severity; quality of life assessed by Skindex-Teen, extent of anxiety, depression, and poor peer relationships using PROMIS child and proxy tools; and parental responses, each of which was expected to correlate with stigma.
A total of 56.4% of 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, the study showed.
Among children with chronic skin disorders, predominantly acne, atopic dermatitis, alopecia areata, and vitiligo, 27% had minimal or no stigma, and 43.8% had at least moderate stigma compared with children with chronic illnesses, including neurologic disorders and cancer.
Stigma scores correlated strongly with reduced quality of life, depression, anxiety, and poor peer relationships, the researchers report. Overall, 29.4% of parents were aware of bullying of their child, which was strongly associated with stigma. Girls reported more stigma than boys. Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety, the study showed.
“Among the various psychosocial domains, stigma was most highly correlated with impaired quality of life and has moderate to strong correlations with depression and anxiety,” study author Amy S. Paller, MS, MD, Chair of the Department of Dermatology and the Director of Skin Biology and Diseases Resource-Based Center and the Walter J. Hamlin Professor of Dermatology at Northwestern University’s Feinberg School of Medicine in Chicago, tells TDD.
“Our study positioned these chronic skin diseases with other chronic medical diseases of children, including neurologic disease and cancer, highlighting the need to take these diseases quite seriously in children. “
The development of social relationships and psychological well-being = in school-aged children sets the stage for adult health, she says. “The impaired development during school age similarly is lifelong.”
The onus is on pediatric dermatologists and other healthcare providers to better recognize and address stigma in pediatric patients with skin diseases.
“I hope that our findings reinforce the need to look beyond the skin manifestations to determine the impact on patient quality of life, including the role of stigma,” she says. “It can be hard to ask patients to talk about their stigmatizing experiences or perceptions, including in front of a parent. “
Patients aged 8 and older can privately fill out free online short forms that capture stigma and others to consider their life quality and mental health, which can be filled out within a minute or two, she says.
The study appears in JAMA Dermatology.
