Central Centrifugal Cicatricial Alopecia: Perceptions of Severity Among Black Female Patients


These data shed light on several important findings related to perceptions of hair loss severity among specific groups with central centrifugal cicatricial alopecia and their QoL measures.

Despite the lack of a statistically significant correlation between central centrifugal cicatricial alopecia (CCCA) severity, according to recent findings, African American female patients’ subjective views of hair loss severity are strongly linked to quality of life (QoL) impacts regardless of clinical severity.1

This research letter was led by M. Agner of Wake Forest School of Medicine in North Carolina, with the investigators conducting their work due to address the psychosocial effects of hair loss which are known to impact morbidity and diminish quality of life. Additionally, CCCA is known to be the most common scarring alopecia type to impact women of African ancestry.

“In particular, scarring types of alopecia like CCCA are associated with higher Dermatology Life Quality Index scores, Hospital Anxiety and Depression Scale scores, and UCLA loneliness scale scores than non-scarring alopecia,” Agner and colleagues wrote.

Agner et al. also noted prior research which highlighted quality of life and disease burden of those with CCCA, though they added that such factors had not been correlated with patients’ disease severity.2

Background and Methods

The investigators carried out their work through a survey of 50 African American female patients who had been given a diagnosis of CCCA and had their condition diagnosed in-clinic. The investigators' inquiries included participants’ views on impacts on quality of life, subjective symptoms, and their condition’s financial implications.

The research team assessed subjects’ disease severity through their utilization of clinical photographs as well as the Central Scalp Scale (CSS). The survey inquiries were adapted from prior research on alopecia areata life quality.

The team had participants assess themselves regarding their disease severity level, using a scale of 1 - 3, and their survey layout was stratified into 5 sections for the purposes of analysis: impacts on one’s daily life, quality of life, adjustments made, psychological effects, and general financial strain. They also used linear regression to evaluate associations and statistical significance, though qualitative responses by subjects were separated into various themes and their frequency evaluated.


A significant correlation could not be identified between participants’ CSS scores and their scores connected to any of the aforementioned categories, though the research team did find a substantial correlation between subjective scores on severity and all of the factors outside of financial strain.

A notable 74% of study subjects concealed their hair loss and 80% reported that they had implemented alterations to their appearance in general. Despite this, the team found that 78% reported that activities could still be enjoyed and not feeling insecure during gatherings, with most subjects reporting little impact on basic daily activities or personal relationships for the most part.

In terms of psychological impact, many of the participants were noted as feeling anxious, burdened emotionally, and having recurrent thoughts regarding their skin condition. In terms of financial strain, the team found that 72% of subjects reported buying wigs or hair patches, with an average cost of $904.84 each year.

Following the investigators’ open-ended questions regarding participants' experiences noted during the worst points of their disease, they found that participants’ own perceptions of hair loss severity were linked to greater impact on various aspects of their life quality, suggesting limitations to clinical severity assessments.

“The main study limitation is the relatively small sample,” they wrote. “Patients' concerns for their hair loss and its impact on (quality of life) should always be considered, despite the clinical appearance of their disease.”


  1. Agner M, Obeime I, Larrondo J, McMichael A. Severity of hair loss and quality of life for patients with central centrifugal cicatricial alopecia. J Eur Acad Dermatol Venereol. 2024 Apr 18. doi: 10.1111/jdv.20036. Epub ahead of print. PMID: 38634726.
  2. Akintilo L, Hahn EA, Yu JMA, Patterson SSL. Health care barriers and quality of life in central centrifugal cicatricial alopecia patients. Cutis. 2018; 102(6): 427–432.
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