Multidimensional burden of scarring alopecia in women: findings from the CAPAIR study.

BACKGROUND

Primary cicatricial alopecias are rare inflammatory disorders that disproportionately affect women and can cause permanent hair loss along with painful scalp symptoms. While their impact on quality of life has been described, comprehensive patient-reported data remain limited.

OBJECTIVE

To characterize symptoms, lifestyle disruption, and financial burden among women with central centrifugal cicatricial alopecia, lichen planopilaris, and frontal fibrosing alopecia.

METHODS

A nationwide cross-sectional survey was distributed via the Scarring Alopecia Foundation. Analyses included female respondents with self-reported centrifugal cicatricial alopecia, lichen planopilaris, or frontal fibrosing alopecia, stratified by subtype, hair loss severity, and symptom burden.

RESULTS

Among 917 women, physical symptoms, lifestyle disruption, and disease-related spending were commonly reported. Burning and pain/tenderness were significantly associated with greater impairment in work productivity, daily activities, and treatment-related costs, while greater scalp involvement also corresponded to increased burden. However, this pattern did not hold among a small subset of completely bald respondents, suggesting that psychosocial burden increases with disease severity but may shift once a certain threshold is surpassed.

CONCLUSION

Primary cicatricial alopecias impose substantial physical, psychosocial, and financial burden on women. These findings underscore the need for improved physician awareness and greater support for women managing this chronic, stigmatizing disease.