Quality of life impairment is present in some but not all patients with frontal fibrosing alopecia

Summary: Abstract Body: Frontal fibrosing alopecia (FFA) is a primary cicatricial alopecia associated with psychological distress and reduced self-esteem, with significant impacts upon quality of life (QoL) that are poorly understood and have not been quantified. This single-site validated survey study assessed QoL in participants with FFA versus healthy participants using a modified Dermatology Life Quality Index (DLQI), where participants responded to DLQI questions in relation to their hair rather than skin. Between December 2023 and August 2024, DLQI scores from 15 female FFA participants (mean age=67.7±8.6 years) and 14 female control participants (mean age=59.2±11.0 years) were collected and analyzed. The majority of participants were Caucasian (93.1%). Among FFA participants, 53.3% reported that their hair disease had “no effects on QoL (DLQI=0-1)” compared to 78.6% in the control group. Significantly higher DLQI scores (Mann-Whitney U=57.5, p<0.032) were observed in the FFA group (mean=3.8±6.1) compared to the control group (mean=0.9±1.1). When evaluating individual DLQI scores, only two FFA participants reported hair loss causing a “very large effect (DLQI=11-20)” or “extremely large effect (DLQI=21-30)” on their QoL. This study provides new evidence of the potentially harmful impacts FFA poses on QoL, emphasizing the importance of a multidisciplinary approach to management with psychosocial support to address QoL challenges. Larger prospective studies offer opportunities to further explore the longitudinal psychosocial impacts of FFA and uncover potential correlations between disease severity and quality of life. Kim T. Nguyen¹, Rania Nuwailati², Divya R. Alley¹, Rebecca Freese³, George Wilcox⁴, Estephan Moana², Maria Hordinsky¹ 1. Department of Dermatology, University of Minnesota Twin Cities, Minneapolis, MN, United States. 2. School of Dentistry, University of Minnesota Twin Cities, Minneapolis, MN, United States. 3. Clinical and Translational Science Institute, University of Minnesota Twin Cities, Minneapolis, MN, United States. 4. Department of Neuroscience, University of Minnesota Twin Cities, Minneapolis, MN, United States. Clinical Research: Epidemiology and Observational Research