The etiology of central centrifugal cicatricial alopecia (CCCA), a clinical and histological pattern of hair loss on the central scalp, has been well studied. This disease is chronic and progressive, with extensive follicular destruction and eventual burnout.1,2 Central centrifugal cicatricial alopecia is most commonly seen in patients of African descent and has been shown to be 1 of the 5 most common dermatologic diagnoses in black patients.3,4 The top 5 dermatologic diagnoses within this population include acne vulgaris (28.4%), dyschromia (19.9%), eczema (9.1%), alopecia (8.3%), and seborrheic dermatitis (6.7%).4 The incidence rate of CCCA is estimated to be 5.6%.3,5 Most patients are women, with onset between the second and fourth decades of life.6
Central centrifugal cicatricial alopecia treatment efficacy is inversely correlated with disease duration. The primary goal of treatment is to prevent progression. Efforts are made to stimulate regrowth in areas that are not permanently scarred. When patients present with a substantial amount of scarring hair loss, dermatologists often are limited in their ability to achieve a cosmetically acceptable pattern of growth. Generally, hair is connected to a sense of self-worth in black women, and any type of hair loss has been shown to lead to frustration and decreased self-esteem.7 A 1994 study showed that 75% (44/58) of women with androgenetic alopecia had decreased self-esteem and 50% (29/58) had social challenges.8
The purpose of this pilot study was to determine the personal, historical, logistical, or environmental factors that preclude women from obtaining medical care for CCCA and to investigate how CCCA affects quality of life (QOL) and psychological well-being.
The investigators designed a survey study of adult, English-speaking, black women diagnosed with CCCA at the Northwestern University Department of Dermatology (Chicago, Illinois) between 2011 and 2017. Patients were selected from the electronic data warehouse compiled by the Department of Dermatology and were included if they fulfilled the following criteria: evaluated in the dermatology department between September 1, 2011, and September 30, 2017, by any faculty physician; diagnosed with CCCA; and aged 18 years or older. Patients were excluded if they did not speak English, as interpreters were not available. All patients who fulfilled the inclusion criteria provided signed informed consent prior to participation. All surveys were disseminated in the office or via telephone from fall 2016 to spring 2017 and took 10 to 15 minutes to complete. The research was approved by the authors’ institutional review board (IRB ID STU00203449).
The CCCA Barriers to Care and Quality of Life Survey is a 53-item survey instrument created by the study’s authors to measure 2 aspects of CCCA hair loss: barriers to medical care and QOL. The initial set of questions pertained to initial hair loss discovery and the number of physicians, both dermatologist and otherwise, seen for hair evaluation. Patients then rated their physician interactions on an ordinal Likert scale (1=poor, 2=fair, 3=good, 4=very good, 5=excellent). If patients saw more than 1 dermatologist or nondermatologist physician, ratings for each provider were included in our analysis. Patients listed the top 3 factors they considered when seeking medical care for their hair loss in order of importance. They also indicated how much they agreed with QOL statements on a Likert scale (1=strongly disagree, 2=disagree, 3=neutral, 4=agree, 5=strongly agree).
Analyses were completed using data analysis software JMP Pro 13 from SAS and a Microsoft Excel spreadsheet. Continuous data were presented as mean, SD, median, minimum, and maximum. Categorical data were presented as counts and percentages. Nine QOL items were aggregated into a self-esteem category (questions 30–38).
Cronbach α, a statistical measure of internal consistency and how closely related items are in a group, was used to evaluate internal consistency reliability; values of 0.70 or greater indicate acceptable reliability.
Of 501 individuals contacted, 34 completed the survey (7% completion rate). Nonrespondents included 7 who refused to participate and 460 who could not be contacted. All respondents self-identified as black women. Median age at time of survey administration was 46 years (range, 28–79 years); median age at CCCA diagnosis was 42 years (range, 15–73 years). Respondents did not significantly differ in age from nonrespondents (P=.46). The majority of respondents had an associate’s degree, bachelor’s degree, or advanced degree of education (master of arts, doctor of medicine, doctor of jurisprudence, doctor of philosophy); however, 8 women reported completing some college, 1 reported completing high school, and 1 reported no schooling. Three respondents had no health insurance.
Initial Hair Loss Discovery
The majority of respondents (22/34 [65%]) were first to notice their hair loss, while 5 (15%) reported hairstylists as the initial observers. Twelve respondents (35%) initially went to a physician to learn why they were losing hair; 6 (18%) instead utilized hairstylists or the Internet. Fifteen women (44%) waited more than 1 month up to 6 months after noticing hair loss before seeing a physician instead of going immediately within a 4-week period, and 16 (47%) waited 1 year or more.
Almost half (16/34 [47%]) of the women went to a nondermatologist physician regarding their hair loss; of them, half (8/16 [50%]) reported their physician did not examine the scalp, 3 (19%) reported their physician offered a biopsy, and none of them reported that their physician diagnosed them with CCCA. The median patient rating of their nondermatologist physician interactions was good (3 on a 5-point scale). Table 1 and Figure 1 show responses to individual items.
All 34 respondents presented to a dermatologist. The majority of respondents (22/34 [65%]) saw either 1 or 2 dermatologists for their hair loss. Three (9%) reported their dermatologist did not examine their scalp. Twelve respondents (35%) reported their dermatologist did not offer a biopsy. Twenty-one respondents (62%) reported a CCCA diagnosis from the first dermatologist they saw. Twenty-three respondents (68%) were diagnosed by dermatologists with expertise in hair disorders. Sixteen (47%) were diagnosed by dermatologists within a skin-of-color center. Fourteen (41%) initial dermatology consultations were race concordant.
The median patient rating of their dermatologist interactions was excellent (5 on a 5-point scale). Table 2 and Figure 2 show responses to individual items. Respondents saw an average of 3 different providers, both dermatologists and otherwise.
Waiting to See a Dermatologist
Nearly all respondents (31/34 [91%]) recommended that other women with hair loss immediately go see a dermatologist.
Barriers to Care
The top 5 factors reported as most important when initially seeking care included the physician’s experience with black hair and CCCA, the patient’s personal hairstyling practices, the physician’s ethnicity, availability of effective treatment options, and treatment cost. Table 3 shows frequency counts for these freely reported factors.
Quality of Life
The median score on 9 aggregated self-esteem items was 4 on a 5-point scale, representing an agree response to statements such as “I feel embarrassed, self-conscious, or frustrated about my hair loss” (28/34 [82%]) and “My hair loss bothers me” (28/34 [82%])(Table 4). Cronbach α for self-esteem survey items was 0.7826.
For the nonaggregated items, many respondents strongly disagreed with statements pertaining to activities of daily living, including “I take care of where I sit or stand at social gatherings due to my hair loss” (18/34 [53%]), “My hair loss makes it difficult for me to go to the grocery store” (29/34 [85%]), “My hair loss makes it difficult for me to attend faith-based activities” (30/34 [88%]), “My hair loss makes it difficult for me to exercise” (23/34 [68%]), “My hair loss makes it difficult for me to go to work and/or school” (24/34 [71%]), “My hair loss makes it difficult for me to go out with a significant other” (24/34 [71%]), “My hair loss makes it difficult for me to spend time with family” (27/34 [79%]), and “My hair loss makes it difficult for me to go to a hairstylist” (16/34 [47%]).