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Japanese Study Finds Patients With Alopecia Areata and Physicians Differ in Viewpoints of Severity and Treatment Satisfaction


The study found disagreement in perceptions of treatment options and overall disease severity among providers and patients.

gballgiggs/Adobe Stock
gballgiggs/Adobe Stock

A cross-sectional study surveyed Japanese patients with alopecia areata (AA) and physicians to further examine the misalignment of disease severity, levels of treatment dissatisfaction, and unmet needs due to a minimal number of effective treatments.

The Japanese Dermatological Association criteria (S1-S5) was used to compare the severity of AA with patient-physician alignment disease severity while exploring treatment options. Researchers conducted a real-world, cross-sectional survey of consultant physicians and their patients from January 2021 to March 2021, categorizing patients into 5 groups based on their scalp hair loss percentage. The least severe patients were defined as having less than 25% scalp hair loss in S1. In S2, patients had 25% to 49% had scalp hair loss; S3 had patients with 50% to 74% scalp hair loss, and S4 had those with 75% to 99% scalp hair loss. The final group, S5, included patients with 100% scalp hair loss.

Depression and anxiety were assessed using the Hospital Anxiety and Depression Scale (HADS), with higher scores indicating more severe symptoms. Quality of life (QoL) was assessed using the Skindex-16 scale (scores, 0-96), with lower scores indicating better QoL. Treatment satisfaction was recorded based on patient self-report.

Self-completion forms were received from 260 patients, representing 47.7% of the 545 with available scalp hair loss data. The patients’ mean age was 43.7 years, 60.9% of whom were female. The total mean Skindex-16 scores were 32.2 for S1, 43.1 for S2, 46.8 for S3, 62.9 S4, and 53.5 S5.

Regarding mental health, 39.8% of patients fell into the borderline abnormal-to-abnormal range on the HADS-A (anxiety) scale, while 29.9% fell into this range on the HADS-D (depression) scale. The mean HADS-D scores were 6.1 and 4.9 in patients with eyebrow/eyelash hair loss and those without, respectively.

Most patients and physicians (69.7%) agreed on disease severity across all groups. However, in moderate to severe cases (S3, S4, S5), physicians tended to rate severity higher than patients, especially in S4 (96.4% vs 75%, respectively). This misalignment was less prominent in groups S1 and S2 where cases were milder. Patients and physicians agreed on severity for the most severe cases (S5).

Corticosteroid use varied across groups with common topical use (range, 29.4%-63.7%), while only 11% received intralesional injections. Cepharanthine and carpronium chloride were popular (37.7% and 31.3% of patients, respectively). Squaric acid dibutyl ester use increased with greater disease severity (18.4% overall, 25% in S4, and 29.4% in S5). Intravenous pulse therapy was used more in S3 and S4 (22.1% and 16.1%, respectively) but was restricted in S5 (8.8%). Less than 2% of patients in group S1, S2, S3, and S4 were untreated patients, which increased to 8.8% in S5. The percentage of patients receiving ongoing treatment with oral or intravenous corticosteroids was 61.5% and 26.3%, respectively.

Dissatisfaction rose with more severe hair loss, reaching 39.0% in S4 patients. While some patients prioritized convenience (avoiding injections) over efficacy, physicians found overall treatment effectiveness lacking. Patient-physician misalignment was high, with 46.0% of patients reporting that they were happier with treatment than their doctors, especially with oral corticosteroids. Dissatisfaction stemmed from unimproved conditions, side effects, and reduced efficacy. While physicians may have been satisfied with the treatment method, they were not satisfied with overall outcomes.

Patients, while sometimes disagreeing with doctors on severity, grouped themselves similarly regarding hair loss impact on their lives. Unlike doctors, they prioritized factors like itch, anxiety, and social impact over hair loss percentage. Notably, nearly 30% and 40% suffered from some level of depression and anxiety, respectively.

More than half of the participants received a combination of therapies, supporting the claim that no single treatment was effective at AA management. In group S5, around 10% of patients were not receiving any treatment, likely due to ineffectiveness.

Study limitations were the minimal inclusion criteria of the physicians with no formal patient selection verification procedures in place. The study design does not allow causal relationship conclusions to be made or any possible identifications of significant associations. Data was not based on true random samples of patients and physicians.

Japanese patients with AA lack effective treatment options, leading to frustration for both patients and doctors. This fuels the need for interventions preventing psychological comorbidities, ultimately improving patient outcomes and management.


Nakamura K, Kamei K, Austin J, et al. Degree of alignment between Japanese patients and physicians on alopecia areata disease severity and treatment satisfaction: A real-world survey. Dermatol Ther (Heidelb). 2024;14(1):151-167. doi:10.1007/s13555-023-01067-y

[This article was originally published by our sister publication, American Journal of Managed Care.]

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