Health care barriers and quality of life in central centrifugal cicatricial alopecia patients

Central centrifugal cicatricial alopecia (CCCA) is known for delayed presentation and treatment. Identifying care barriers may shorten delays to treatment and improve outcomes. Understanding how CCCA impacts quality of life (QOL) also is important. Objectives of this pilot study were to elucidate the diagnostic experience for CCCA patients and understand how CCCA affects QOL. Patients completed a novel, 53-item, cross-sectional survey (CCCA Barriers to Care and Quality of Life Survey) that was developed by study investigators. The survey was completed in person or by telephone for English-speaking, adult, black female patients diagnosed with CCCA at the Northwestern University Department of Dermatology (Chicago, Illinois) between 2011 and 2017. The importance of the physician's experience with black hair and CCCA, the degree to which respondents were bothered by their CCCA, and median QOL score were noted. Central centrifugal cicatricial alopecia presents a unique set of challenges to obtain care. Lack of physician experience with black hair and CCCA is a barrier to care for many with this disease. Self-esteem of CCCA patients is affected by hair loss.