OBJECTIVES: To assess whether the EQ-5D is a sensitive measure of health-related quality of life (HRQoL) in people with alopecia areata (AA) by comparing scores from sub-groups of people defined by the extensiveness of hair loss.

METHODS: Data from participants with AA enrolled in the ALLEGRO-2b/3 trial (NCT03732807) of ritlecitinib were analyzed. Participants completed the Alopecia Areata Patient Priority Outcomes (AAPPO) measure (an AA-specific measure assessing emotional symptoms and activity limitations), the EQ-5D-5L or EQ-5D-Y (a version of EQ-5D used with children and young people) and Short-form 36 (SF-36) across 48-weeks of follow up. The extent of scalp hair loss was assessed using the Severity of Alopecia Tool (SALT) scores (0-100) which indicate the percentage total of scalp hair loss. Data across all time points and treatment arms were pooled and HRQL scores were summarized by SALT score categories. Cohen’s d statistic was estimated to assess the degree of difference in HRQL (as assessed by each measure) between SALT 0-10 and SALT 100.

RESULTS: Data were available from 636 participants. The AAPPO Emotional Symptoms (Cohen’s d=-0.79) and Activity Limitations scores (Cohen’s d=-0.48) were much worse for participants with more extensive hair loss. For the generic EQ-5D measures, only small or very small effect sizes were observed (EQ-5D-5L Cohen’s d =0.24; EQ-5D-Y Cohen’s d =-0.03). The SF-36 also showed little differentiation between SALT score groups.

CONCLUSIONS: The EQ-5D may not adequately measure the burden of AA on patients’ HRQL. Previous research has shown that much of the burden in AA is a psychosocial impact and the EQ-5D may not be well suited for measuring this. Insensitivity to the burden of AA suggests that the EQ-5D may also not measure treatment-related benefit with hair regrowth. Data from other measures could be considered if they are shown to be more relevant.