Vestergaard Christian, Carrillo Daniel de la Rosa, Mandla Randeep, Frøstrup Anne Grete, Gren Susanne T, Vänni Petri, Asikainen Anna-Kaisa, Kofoed Kristian, Mørk Cato
Department of Dermatology, Aarhus University hospital, Aarhus, Denmark.
Volvat Medical Centre, Oslo, Norway.
Acta Derm Venereol. 2025 Jul 19;105:adv43318. doi: 10.2340/actadv.v105.43318.
Alopecia areata significantly impacts patients' emotional and psychosocial well-being. This survey investigated patients' perspectives on disease severity and its impact on quality of life. The study evaluated whether disease assessment tools (Severity of Alopecia Tool, Dermatology Life Quality Index, and Patient Unique Stigmatization Holistic tool in dermatology) reflect patients' perceptions of their condition. The study was conducted as an anonymous social media survey in Norway and Denmark. The questionnaire was divided into 3 main sections: (i) demographics and disease characteristics; (ii) disease severity and QoL measures; and (iii) patient perception and psychosocial impact. A total of 360 individuals participated in the survey reporting alopecia areata as mild (15%), moderate (29%), or severe (58%). Some 61% reported alopecia areata to interfere with their daily or weekly activities. All disease assessment tools demonstrated an age-dependent pattern, where scores were highest in the youngest (< 30 years) responder group. The relationship between Dermatology Life Quality Index and Severity of Alopecia Tool scores was found to be weak (R-squared = 0.08). Similarly, the correlation between Dermatology Life Quality Index and self-reported disease severity was also weak (R-squared = 0.136). This study demonstrates that there is a clear need for the development of more comprehensive, validated, and patient-centred assessment tools that can accurately reflect the physical, emotional, psychological, and social challenges faced by individuals with alopecia areata.
斑秃对患者的情绪和社会心理健康有显著影响。这项调查研究了患者对疾病严重程度及其对生活质量影响的看法。该研究评估了疾病评估工具（斑秃严重程度工具、皮肤病生活质量指数和皮肤病患者独特污名化整体工具）是否反映了患者对自身病情的认知。该研究作为一项在挪威和丹麦进行的匿名社交媒体调查开展。问卷分为3个主要部分：（i）人口统计学和疾病特征；（ii）疾病严重程度和生活质量测量；以及（iii）患者认知和社会心理影响。共有360人参与了该调查，报告斑秃为轻度（15%）、中度（29%）或重度（58%）。约61%的人报告斑秃干扰了他们的日常或每周活动。所有疾病评估工具都呈现出年龄依赖模式，得分在最年轻（<30岁）的应答者组中最高。发现皮肤病生活质量指数与斑秃严重程度工具得分之间的关系较弱（决定系数=0.08）。同样，皮肤病生活质量指数与自我报告的疾病严重程度之间的相关性也较弱（决定系数=0.136）。这项研究表明，显然需要开发更全面、经过验证且以患者为中心的评估工具，以准确反映斑秃患者面临的身体、情绪、心理和社会挑战。
