JMIR Publications

ABSTRACT

Background:

Alopecia areata (AA) is associated with negative impacts on quality of life (QoL). Data is lacking on this impact for Canadian patients and their caregivers.

Objective:

To investigate the burden of AA on Canadian patients and their caregivers.

Methods:

Four online surveys were created for patients 5-11 years old, 12-17 years old, ≥18 years old, and for caregivers of children (<18 years old) with AA. These were disseminated through the Canadian Alopecia Areata Foundation website and to dermatologists across Canada.

Results:

One-hundred and fifteen adult patients (97% female), 14 pediatric patients (93% female) and 15 caregivers completed the surveys online. The majority (95%) of patients felt uncomfortable or self-conscious about their appearance. Camouflaging hair loss with hats, scarves, and hair pieces was a common practice for 78.6% of pediatric and 74% of adult patients. Avoidance of social situations was reported by 61.5% of pediatric and 68.2% of adult patients. Constant worry about losing achieved hair growth was a concern for 61.5% of pediatric and 68.2% of 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 their feelings of guilt or helplessness was 4.2 (SD 1.2). The impact on QoL was moderate for both children and adults. Based on the Adjustment Disorder New Module, 62% of patients were at high risk of an adjustment disorder. Abnormal anxiety scores were recorded in 35% of patients compared to abnormal depression scores in 17%.

Conclusions:

This study confirmed significant burden of AA on Canadian patients’ and caregivers’ QoL.