Evaluating Scarring Alopecia Therapies from the Patient Perspective: Knowledge, Barriers to Care, and Treatment Satisfaction.

Abstract

Introduction: Scarring alopecias (SAs) cause permanent hair loss and psychological distress. With no FDA-approved SA treatments, patients face significant barriers to care. Despite promising evidence supporting the use of Janus kinase inhibitors (JAKi) to treat SAs, access remains limited. This study aimed to assess the demographic profile, psychosocial burden, treatment experiences, and barriers to care among patients with SA.

Methods: An IRB-approved online survey was distributed to adults (≥18 years) with a self-reported SA diagnosis via the Scarring Alopecia Foundation (SAF) listserv and at the April 2025 SAF Conference. Wilcoxon-Mann-Whitney U tests and χ² tests were performed using SAS v9.4.

Results: Among 294 respondents (98.0% female, mean age 61, 81.3% White), common diagnoses included frontal fibrosing alopecia (66.3%), lichen planopilaris (41.5%), and central centrifugal cicatricial alopecia (12.6%). Only 37.5% reported well-controlled symptoms; 78.9% experienced SA-related depression or anxiety. JAKi awareness was high (71%), but use was low (30%), with significant differences based on gender, region, income, and education. Barriers to treatment access included provider reluctance (46%), insurance denial (18%), and high cost (16%).

Conclusions: SA patients face significant psychosocial distress and barriers to accessing therapies. Improving equitable access to care requires enhanced provider education, broader insurance coverage, and stronger patient assistance programs.