Comment
The majority of respondents were first to discover their hair loss. Harbingers of CCCA hair loss include paresthesia, tenderness, and itch,6 symptoms that are hard to ignore. Unfortunately, many patients notice hair thinning years after the scarring process has begun and a notable amount of hair has already been lost.6,9
Fifteen percent of respondents learned about their hair loss from their hairstylist. Women of African descent often maintain hairstyles that require frequent interactions with a hair care professional.7,10 As a result, hairstylists are at the forefront of early alopecia detection and are a valued resource in the black community. Open dialogue between dermatologists and hair care professionals could funnel women with hair loss into treatment before extensive damage.
Fifteen women (44%) recalled a waiting period of several months before seeking medical assistance, and 16 (47%) reported waiting 1 year or more. However, 91% of respondents indicated that women with hair loss should immediately see a physician for evaluation, thus patient experiences underscore the importance of early treatment. In our experience, many patients wait years before presenting to a physician. Some work with their hairstylists first to address the issue, while others do not realize how notable the loss has become. Some have a negative experience with one provider or are told there is nothing that can be done and then wait many years to see a second provider. Proper education of patients, physicians, and hairstylists is important in the identification and prompt treatment of this condition.
It is perhaps to be expected that patients rated interactions with dermatologists as excellent and very good more frequently than interactions with nondermatologists, which may be due to an absence of thorough hair evaluation with nondermatologists. Respondents reported that only half of nondermatologist providers actually examined their scalp during an initial encounter. However, both physician groups had the lowest frequencies of excellent and very good ratings on “understanding of your hair” (Tables 1 and 2). Patients with hair loss seek immediate answers, and often it is the specialist that can give them a firm diagnosis as opposed to a primary care provider. The fact that dermatologists and nondermatologists alike scored poorly on patient-perceived understanding of CCCA indicates an area for improvement within patient-physician interactions and physician knowledge.
The top 5 factors important to respondents when obtaining medical 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. Patients with CCCA seeing dermatologists may discern a lack of experience with ethnic hair that leads patients to doubt their physicians’ ability to provide adequate care and decreased shared decision-making.11,12 These patient perceptions are not unfounded; a 2008 study showed that dermatology residents are not uniformly trained in diseases pertaining to patients with skin of color.13 Thus, incorporation of education on skin of color in dermatology training programs is critical.
Finally, hair loss patients often have concerns regarding how medical therapeutics could adversely affect personal hair care regimens, including washing and hairstyling practices. Current research demonstrates that patients consider treatment effectiveness and ability to be integrated into daily routines after establishing medical care.14 The present study shows that some CCCA patients contemplate how well a therapy will work before seeking medical care, demonstrating that patients continue to have these concerns after establishing medical care. Consideration of treatment effectiveness is important for both patients and providers, as there is minimal evidence behind current CCCA management practices. The ability for treatments to be easily integrated into daily hair care habits is important to maintain patient compliance.
Participants’ median self-esteem scores indicate the effect of CCCA on morale and self-perception. Items scrutinizing this construct had acceptable internal consistency reliability. It is interesting to note that activities of daily living were not impacted by hair loss. Examination of self-esteem is important in the alopecia population because the effect of hair loss on mental status is well documented.15-17 Low self-esteem has been reported as a prospective risk factor for clinical depression.18-20 In black patients, clinical depression rates surpass those of Hispanics and non-Hispanic white individuals.21 Dermatologists must consider the psychological status of all patients, particularly populations at risk for severe disease.
Limitations of this study include the small (34 participants) and mostly highly educated sample size, limited survey validity, and potential patient bias. Because many patients changed their address and/or telephone number in the time between CCCA diagnosis and the present study, we were left with a small pilot study, which minimizes the impact of our findings. Furthermore, our survey was created by a single expert’s opinion and modeling from preexisting alopecia questionnaires16; full validity procedures analyzing face, content, and criterion validity were not undertaken. Finally, the majority of respondents were patients of one of the study’s authors (S.S.L.P.), which could influence survey responses. The fact that some providers were hair experts and some were race concordant with their patients also could potentially affect the responses received, which was not analyzed in the present study. Future studies with more respondents from multiple providers would help clarify our preliminary findings.
Conclusion
Analysis of barriers to care and QOL in patients with skin of color is an essential addition to dermatologic discourse. Alopecia is particularly important to investigate, as prior research has found it to be one of the top 5 diagnoses made in patients with skin of color.3,4 Alopecia has been shown to negatively affect QOL.15,22,23 This study, although limited by small sample size, suggests CCCA also is a contributor to self-esteem challenges, similar to other forms of hair loss. Patient-physician interactions and personal hairstyling practices are prominent barriers to care for CCCA patients, demonstrating the need for quality education on skin of color and cultural competency in dermatology residencies across the country.