Gilding Anthony Justin, Ho Nhung, Pope Elena, Sibbald Cathryn
Department of Chemistry and Biology, Faculty of Science, Toronto Metropolitan University, Toronto, ON, Canada.
Canadian Alopecia Areata Foundation, King City, ON, Canada.
JMIR Dermatol. 2022 Oct 6;5(4):e39167. doi: 10.2196/39167.
Alopecia areata (AA) is associated with negative impacts on the quality of life (QoL). Data on this impact are lacking for Canadian patients and their caregivers.
This study aims to investigate the burden of AA on Canadian patients and their caregivers.
We created 4 online surveys for patients 5-11 years old, 12-17 years old, and ≥18 years old and for caregivers of children (<18 years old) with AA. These were disseminated through the Canadian Alopecia Areata Foundation (CANAAF) website and to dermatologists across Canada.
In total, 115 adult patients (n=100, 87%, female), 14 pediatric patients (n=13, 92.9%, female), and 15 caregivers completed the surveys online. The majority (n=123, 95%) of patients felt uncomfortable or self-conscious about their appearance. Camouflaging hair loss with hats, scarves, and hairpieces was a common practice for 11 (78.6%) pediatric and 84 (73%) adult patients. Avoidance of social situations was reported by 8 (57.1%) pediatric and 75 (65.2%) adult patients. Constant worry about losing the achieved hair growth was a concern for 8 (57.1%) pediatric and 75 (65.2%) adult patients. On a scale of 1-5, the mean score of caregivers' own feelings of sadness or depression about their child's AA was 4.0 (SD 0.9) and of their feelings of guilt or helplessness was 4.2 (SD 1.2). The impact on the QoL was moderate for both children and adults. Based on the Adjustment Disorder New Module-20 (ADNM-20), 71 (61.7%) of 115 patients were at high risk of an adjustment disorder. Abnormal anxiety scores were recorded in 40 (34.8%) patients compared to abnormal depression scores in 20 (17.4%) patients.
This study confirmed a significant burden of AA on Canadian patients' and caregivers' QoL.
斑秃（AA）会对生活质量（QoL）产生负面影响。加拿大患者及其护理人员缺乏关于这种影响的数据。
本研究旨在调查斑秃对加拿大患者及其护理人员的负担。
我们为5至11岁、12至17岁以及≥18岁的患者和患有斑秃的18岁以下儿童的护理人员创建了4项在线调查。这些调查通过加拿大斑秃基金会（CANAAF）网站以及分发给加拿大各地的皮肤科医生。
共有115名成年患者（n = 100，87%，女性）、14名儿科患者（n = 13，92.9%，女性）和15名护理人员在线完成了调查。大多数（n = 123，95%）患者对自己的外表感到不舒服或自觉难为情。11名（78.6%）儿科患者和84名（73%）成年患者常用帽子、围巾和假发掩盖脱发。8名（57.1%）儿科患者和75名（65.2%）成年患者报告避免社交场合。8名（57.1%）儿科患者和75名（65.2%）成年患者一直担心已生长出的头发会再次脱落。在1至5分的量表上，护理人员对孩子患斑秃自己感到悲伤或抑郁的平均评分为4.0（标准差0.9），感到内疚或无助的平均评分为4.2（标准差1.2）。对儿童和成人的生活质量影响均为中度。根据新的适应障碍模块 - 20（ADNM - 20），115名患者中有71名（61.7%）有适应障碍的高风险。40名（34.8%）患者记录到焦虑评分异常，而20名（17.4%）患者记录到抑郁评分异常。
本研究证实斑秃对加拿大患者及其护理人员的生活质量有重大负担。
