Introduction: Severity of alopecia areata (AA) has been commonly defined by clinician assessment of scalp hair loss. Our aim was to characterize patient-reported factors beyond scalp hair loss that contribute to AA severity while modifying for socioeconomic factors. Methods: Patients with AA were recruited to take a survey. Multivariable linear regression was performed to evaluate lifetime AA severity while adjusting for socioeconomic variables, current AA severity at the time of survey, and patient-reported disease burden. Results: Patient-reported AA severity was associated with scalp hair loss (OR: 4.19, 95% CI: [1.35–13], p = 0.013), facial hair loss (OR: 3.55, 95% CI: [1.75–7.21], p < 0.001), increased financial burden (OR: 2.41, 95% CI: [1.21–4.8], p = 0.013), and greater emotional burden (OR: 2.96, 95% CI: [1.48–5.93], p = 0.002), while presence of comorbidities were linked to less severe AA (OR: 0.38, 95% CI: [0.17–0.84], p = 0.017). Conclusion: Survey population was homogeneous and may not reflect the general community with AA. Self-reported data may introduce recency or recall bias. Scalp and facial hair loss, along with emotional and financial burdens, correlate with increased patient-reported AA severity. This suggests factors beyond scalp hair loss should be considered when assessing AA severity.

Alopecia areata (AA) is an autoimmune condition that causes hair loss. Traditionally, doctors assess the severity of AA by measuring how much scalp hair is lost. However, people with AA often feel that other factors, like anxiety, depression, and financial stress, play a role in how severe their condition seems to them. This study analyzed survey responses from 500 people with AA who had seen a healthcare provider in the past year. The survey asked about the extent of hair loss, emotional and financial challenges, and overall health. Participants also rated how severe they felt their AA was over their lifetime. The findings showed that people with more hair loss on the scalp and face, as well as those experiencing emotional or financial challenges, were more likely to describe their AA as severe. In contrast, people with other health problems were less likely to report severe AA, though the reason for this is unclear. These results suggest that current ways of assessing AA may not fully capture how patients experience their condition. Factors like emotional and financial strain and visible hair loss in areas like the face significantly impact patients’ perceptions of severity. Including these factors in assessments could improve care, expand treatment access, and provide better support for people living with AA. This study highlights the need for new tools to better measure AA severity from the patient’s perspective.

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