Healthcare barriers and quality of life in central centrifugal cicatricial alopecia patients

Description

A Northwestern University Capstone Project

Abstract

Central Centrifugal Cicatricial Alopecia (CCCA) is a condition known for delayed presentation and treatment. Identifying barriers to care may shorten this delay and improve outcomes. Understanding how CCCA specifically impacts quality of life is also important. Many barriers prevent women with CCCA from obtaining effective dermatological care. Moreover, this condition has a significant impact on patients'quality of life. The objectives of this pilot study were: 1) to elucidate the experience of initial diagnosis for CCCA patients, and 2) to understand how CCCA hair loss affects quality of life. CCCA patients completed a 53-item cross-sectional survey (CCCA Barriers toCare and Quality of Life SurveyCBCQLS) developed by the study investigators. The CBCQLS measured how alopecia was initially discovered, what factors were most important when seeking medical care, how patients felt about their physicians, and how hair loss created challenges in self-esteem and activities of daily living. The CBCQLS was completed in person or by telephone by English-speaking, adult, African-American female patients diagnosed with CCCA at the Northwestern University Department of Dermatology between 2011 and 2017. Participants included 34 African-American women ranging in age from 28 to 79. Respondents median age was 46 (range 28-79); the median age at CCCA diagnosis was 42 (range 15-73). Most (n=22, 65%) first noticed their hair loss themselves, while 15% reported their hairstylist was the first to notice signs of alopecia. Nearly all respondents (n = 31, 91%) recommended that other women with hair loss immediately go see a dermatologist. Some respondents (n=13, 38%) reported their physicians experience with Black hair and CCCA was most important to them as they sought medical care for hair loss. The majority (n=30, 88%)reported their hair loss bothered them. Median QOL score was 4 on a five-point scale, corresponding with an "Agree" response to statements including "I feel embarrassed, self-conscious, or frustrated about my hair loss" and "My hair loss bothers me." CCCA presents a unique set of challenges for women 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.

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