Rustad Andrea M, Soltani Hannah, Yang Lynna J, McKenney Jenna E, Ren Ziyou, Rangel Stephanie M, Paller Amy S
Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Pediatr Dermatol. 2025 May-Jun;42(3):499-505. doi: 10.1111/pde.15920. Epub 2025 Apr 6.
BACKGROUND/OBJECTIVES: Bullying of children with chronic disorders is associated with an increased risk of depression, anxiety, poor self-esteem, and suicidal ideation. Congenital ichthyoses are genodermatoses with extensive visible scaling and inflammation. Bullying is a frequent concern of families with ichthyosis but is rarely discussed or investigated.
Bullying experience and the impact on children with ichthyosis and their caregivers were investigated utilizing survey methodology and validated questionnaires. Correlations were explored between demographic and ichthyosis characteristics, bullying exposure (Child Adolescent Bullying Scale-9), child and caregiver psychosocial functioning (Patient-Reported Outcomes Measurement Information System tools), and family quality of life (Family Dermatology Life Quality Index).
Overall, 49 dyads completed the survey, with a mean child age of 12 years, 43% female, and 35% non-white. Lamellar (27%), epidermolytic (16%), and with confetti (12%) ichthyosis subtypes were most common. Child-reported bullying exposure correlated strongly with poor peer relationships (r = -0.63) and moderately with stigma (r = 0.53). Caregiver depression and anxiety scores were moderately correlated with caregiver's perception of child's bullying (r = 0.46 and r = 0.52, respectively). Poor family quality of life (QoL) was moderately correlated with proxy severity, caregiver depression and anxiety, poor peer relationships, and poor mobility.
Recognition of bullying and its potential impact on QoL is an important component of exploring the psychosocial impact of ichthyosis and providing holistic care.
背景/目的：欺负患有慢性疾病的儿童会增加其患抑郁症、焦虑症、自卑和自杀意念的风险。先天性鱼鳞病是一种有广泛可见鳞屑和炎症的遗传性皮肤病。欺负行为是鱼鳞病患儿家庭经常关心的问题，但很少被讨论或研究。
采用调查方法和经过验证的问卷，调查欺负经历及其对鱼鳞病患儿及其照顾者的影响。探讨了人口统计学和鱼鳞病特征、欺负暴露情况（儿童青少年欺负量表-9）、儿童和照顾者的心理社会功能（患者报告结局测量信息系统工具）以及家庭生活质量（家庭皮肤病生活质量指数）之间的相关性。
总体而言，49对被试完成了调查，儿童平均年龄为12岁，43%为女性，35%为非白人。板层状鱼鳞病（27%）、表皮松解性鱼鳞病（16%）和纸屑状鱼鳞病（12%）亚型最为常见。儿童报告的欺负暴露与同伴关系差密切相关（r = -0.63），与耻辱感中度相关（r = 0.53）。照顾者的抑郁和焦虑评分与照顾者对儿童受欺负的认知中度相关（分别为r = 0.46和r = 0.52）。家庭生活质量差与代理严重程度、照顾者抑郁和焦虑、同伴关系差以及行动不便中度相关。
认识到欺负行为及其对生活质量的潜在影响是探索鱼鳞病心理社会影响和提供整体护理的重要组成部分。
