Patient-Reported Burden of Severe Alopecia Areata: First Results from the Multinational Alopecia Areata Unmet Need Survey

Abstract

Purpose Alopecia areata (AA) is an autoimmune disease characterized by hair loss that has significant psychosocial implications. This study aims to describe the patient-reported burden of severe AA, coping mechanism and information needs using data from the multinational AA Patient Satisfaction and Unmet Need Survey. Patients and Methods Participants with current or previous ≥50% scalp hair loss (n = 747) were recruited from 11 countries and completed a web-based survey that assessed demographics, clinical characteristics, disease burden and psychosocial impact. Data were stratified according to sex, current age, disease duration and current severity of scalp hair loss. Results The mean (SD) age of participants was 43.8 (7.1) years, 55.3% were women, and 63.5% reported AA symptoms within 6 months of diagnosis. Most participants had black or brown hair (88.4%), reported a disease duration of 2 years or more (75.6%) and had current scalp hair loss of ≥50% (87.4%). Severe hair loss also extended to eyebrow (46.9%), eyelash (48.7), beard (61.5%) and body hair (73.2%). Participants commonly reported comorbidities such as anxiety (26.1%), depression (18.1%) and sleep problems (28.1%). The Dermatology Life Quality Index revealed a severe impact on quality of life; 86.2% of participants scored >10. Mental health/mood was significantly affected; 55.8% of participants reported a substantial impact. Long-term effects included decreased self-esteem (32.9%), poor mental health (28.1%) and challenges in day-to-day activities (27.2%). Information needs were centered around treatment expectations, mental health, and available treatment options. More severe symptoms and a greater daily impact were reported by women and those with a longer disease duration. Conclusion The study emphasizes the substantial burden, including impaired quality of life and psychological well-being, of severe AA on the lives of surveyed participants. The findings highlight the importance of comprehensive disease management strategies that address both physical and psychosocial aspects of AA.