How does the severity of central centrifugal cicatricial alopecia (CCCA) impact quality of life? A recently published study found that subjective perception of hair loss severity significantly impacted patient quality of life.

 

Fifty African American women with CCCA completed a survey assessing categories of adjustments made, impact on quality of life and daily living aspects, and psychological and financial burden. Clinical photographs were used to quantify progression of hair loss and determine disease severity. Additionally, patients gave themselves a subjective hair loss severity score of 1 (mild), 2 (moderate), or 3 (severe).

 

While clinical severity of hair loss was not significantly correlated with any categories, patients’ subjective severity scores positively correlated with all categories other than financial burden.

               

The majority of patients reported altering their appearance due to hair loss (80%) and/or concealing the area of hair loss (74%). Fortunately, most patients reported being able to pursue activities of enjoyment in some capacity (78%), disagreed with being treated differently by others (82%), and disagreed with avoiding social gatherings (74%).

While 80% reported minimal impact on current personal or romantic relationships, 38% were unable to establish relationships. Over half of the patients reported feeling that the hair loss was a significant burden (60%), feeling anxiety at some point (54%), and/or thinking about the situation repeatedly (58%). Most patients (72%) reported buying wigs, weaves, or hair patches in addition to a treatment regimen, with an average of $905 spent on wigs in a year.

 

The most common response to the question of when patients felt like their CCCA was at its worst was at the time of diagnosis (30%). The most frequent responses to the question of what the biggest challenge patients faced were doing different hairstyles (32%) and decreased self-esteem/confidence/loss of identity (18%).

               

In conclusion, CCCA may have a significant quality of life and psychological burden on patients regardless of clinical severity of disease. These findings underscore the importance of considering subjective perception of hair loss and its impacts in the care of patients with CCCA.

 

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Article Summary By Tejashri Venkatesh, MD Candidate 2025, Chicago Medical School at Rosalind Franklin University

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