Institute for Pigmentary Disorders in association with Ernst Moritz Arndt University, Greifswald, GermanyCentre for Skin Sciences, School of Life Sciences, University of Bradford, Bradford, UK.
Int J Dermatol. 2014 Jan;53(1):43-50. doi: 10.1111/j.1365-4632.2012.05656.x. Epub 2013 May 21.
Vitiligo is an acquired, non-contagious depigmentation disorder involving a patchy loss of skin color. It often leads to stigmatization, embarrassment, and reduced quality of life (QoL) in adult patients. Little is known about children's reactions.
This study aimed to explore disease-related QoL and experiences in a multinational group of children and adolescents.
Quality of life, disease-related experiences and behavior, and sociodemographic data were examined in 24 boys and 50 girls (age range: 7-17 years) using the Children's Dermatology Life Quality Index (CDLQI) and additional questions. Eighteen children without skin disorders served as age-, sex- and skin color-matched controls.
The mean disease duration was 3.5 years. The most common sites of onset were the trunk, legs, and head and neck. Overall, 35.1% of the 74 subjects reported a positive family history, 91.9% had visited a doctor, and 75.7% had received treatment. Two-thirds (66.2%) were distressed by their vitiligo, and 93.2% had experienced low-key stigmatization, 44.6% nasty comments, and 21.7% bullying. A total of 24.4% had concealed their disease, and 29.7% had avoided situations because of vitiligo. Frequency of stigmatization influenced avoidant behavior. Parents, particularly mothers, and friends were important sources of support. Patients and controls had similar numbers of friends and leisure time activities. The mean CDLQI score of the group was low (2.8). Higher CDLQI scores were related to stigmatization, hiding of white spots, facial depigmentation, avoidance of situations, and a vitiligo-negative family history.
Disease-related stigmatization, negative experiences, and avoidant behavior affect QoL. Therefore, the CDLQI should be combined with other instruments to screen for disease burden. These results call for the careful evaluation of young patients with vitiligo.
白癜风是一种获得性、非传染性的色素减退性疾病，表现为皮肤颜色的斑块状丧失。它常导致成年患者出现污名化、尴尬和生活质量（QoL）下降。关于儿童的反应知之甚少。
本研究旨在探索一组来自多个国家的儿童和青少年患者的疾病相关 QoL 和体验。
使用儿童皮肤病生活质量指数（CDLQI）和其他问题，对 24 名男孩和 50 名女孩（年龄范围：7-17 岁）的生活质量、疾病相关经历和行为以及社会人口学数据进行了检查。18 名无皮肤疾病的儿童作为年龄、性别和肤色匹配的对照组。
平均疾病持续时间为 3.5 年。最常见的发病部位是躯干、腿部和头颈部。总体而言，74 名受试者中有 35.1%报告有阳性家族史，91.9%曾看过医生，75.7%接受过治疗。三分之二（66.2%）的患者对自己的白癜风感到困扰，93.2%经历过低调的污名化，44.6%受到过恶意评论，21.7%遭受过欺凌。共有 24.4%的患者隐瞒了自己的疾病，29.7%的患者因为白癜风而避免某些情况。污名化的频率影响回避行为。父母，特别是母亲和朋友，是重要的支持来源。患者和对照组的朋友数量和休闲活动相似。该组的平均 CDLQI 评分较低（2.8）。更高的 CDLQI 评分与污名化、隐藏白斑、面部色素减退、避免某些情况以及阴性家族史有关。
疾病相关的污名化、负面经历和回避行为会影响 QoL。因此，CDLQI 应与其他工具结合使用，以筛查疾病负担。这些结果呼吁对患有白癜风的年轻患者进行仔细评估。
