Burden of Illness in Alopecia Areata: A Cross-Sectional Online Survey Study

Previous QOL and disease burden studies have not captured all relevant aspects of living with alopecia areata (AA). To better understand the burden and everyday experience of living with moderate-to-severe AA, a cross-sectional, online, quantitative-qualitative survey was developed to assess symptoms, relationships, productivity, treatments, and financial burden. Adult patients were recruited from the National Alopecia Areata Foundation database. Data were analyzed descriptively. A total of 216 patients completed the survey. Most were female (83%), aged ≥45 years (59%), and white (78%). Nearly 2 of 3 respondents (62%) made different major life decisions (regarding relationships, education, or career) owing to AA. Most respondents (85%) stated coping with AA as a daily challenge, citing mental health issues, concealing hair loss, and others’ reactions; 47% reported anxiety and/or depression. Many patients (75%) persistently concealed hair loss (mean time spent, 10.3 h/wk). Treatment discontinuation was common owing to lack of efficacy, side effects, and cost. Associated expenditures included buying wigs or hairpieces and psychotherapy (mean ∼$2,000/y each). Survey respondents comprised a self-selected sample, which may not reflect the entire population. The impact of AA extends beyond cosmetic concerns and carries a considerable psychosocial burden. Efficacious, less burdensome AA treatments are needed to regrow hair and alleviate psychosocial sequelae.