Departments of Dermatology and Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
Department of Pediatrics, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois.
JAMA Dermatol. 2024 Jun 1;160(6):621-630. doi: 10.1001/jamadermatol.2024.0594.
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.
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.
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).
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.
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.
儿童慢性皮肤疾病通常可见，可能导致污名化。然而，慢性皮肤疾病导致的污名化程度及其与心理健康的关联仍需要进一步研究。
研究慢性儿科皮肤疾病的污名化程度、对疾病可见性和严重程度的依赖，以及与心理健康和生活质量（QOL）的关联。
设计、地点和参与者：这是一项在美国和加拿大 32 个儿科皮肤科中心进行的横断面、单次就诊研究，于 2018 年 11 月 14 日至 2021 年 11 月 17 日进行。参与者包括年龄在 8 至 17 岁的患有慢性皮肤疾病的患者和 1 名家长。
使用患者报告的结果测量仪器系统（PROMIS）皮肤污名量表，比较儿童、照顾者和医生评估的疾病可见性（主要结局）和严重程度，以及 QOL 降低（由 Skindex-Teen 评估）、抑郁、焦虑和较差的同伴关系（PROMIS 儿童和代理工具）（次要结局）。
研究纳入了 1671 名儿童（57.9%为女性；平均[SD]年龄为 13.7[2.7]岁）。共有 56.4%的参与者报告疾病可见度高，50.5%报告疾病严重程度为中度。污名评分与医生评估和儿童/代理评估的疾病可见性和严重程度显著不同。在患有慢性皮肤疾病的儿童中，主要是痤疮、特应性皮炎、斑秃和白癜风，只有 27.0%的儿童 T 评分低于 40（最低或无污名），而 43.8%的儿童至少有中度污名（T 评分≥45），与患有各种慢性疾病的儿童相比。污名评分与 QOL 降低呈强相关（Spearman ρ=0.73），与抑郁（ρ=0.61）、焦虑（ρ=0.54）和较差的同伴关系（ρ=-0.49）也呈强相关。总体而言，29.4%的家长知道自己的孩子受到欺凌，这与污名化密切相关（Cohen d=-0.79，未受欺凌的孩子的污名化程度较低）。女孩报告的污名比男孩多（Cohen d=0.26）。患有多汗症和化脓性汗腺炎的儿童最有可能出现抑郁和焦虑加重的情况。
这项研究的结果表明，医生对疾病严重程度和可见性的评估不足以评估疾病对患者/照顾者的影响。确定污名化，包括欺凌，并通过医疗和社会心理干预来跟踪改善情况，可能是从业者的关键作用。
