Research Emphasizes High Quality of Life Disease Burden With Alopecia Areata

New research has elucidated patient preferences and willingness to trade off duration for quality of life in patients with alopecia areata, highlighting a high disease burden.1

“Health-related quality of life (HRQOL) can be impacted by AA. Psychosocial domains can be particularly impacted because hair loss can induce social anxiety, self-consciousness, and reduced participation in social and physical activities; patients may also experience high levels of anxiety and depression. An association between more extensive hair loss and more severe impairment across HRQOL domains has been reported2,” lead investigator Caleb Dixon, Senior Research Associate at Acaster Lloyd Consulting, and colleagues wrote.1

Dixon and colleagues presented 5 clinical vignettes describing health states of AA by hair loss and its impacts and 1 caregiver vignette describing caring for an adolescent patient with AA to adult participants with AA in the United Kingdom currently experiencing scalp hair loss or with no scalp hair loss. Vignettes were presented participants in online, interviewer-guided sessions between May and June 2023.

After imagining themselves as either the patient or caregiver in the vignette, participants rated the state using a visual analog scale (VAS) and completed time trade-off (TTO) assessments by trading 6-month intervals from a 10-year period in full health to avoid the given health state. TTO utility values ranged from 0 (dead) to 1 (full health). Participants rated HRQOL using the EQ VAS (0-100 from worst to best possible health) and the EQ-5D-5L questionnaire. For each health state vignette, participants chose between living 10 years in the described state or sacrificing time to instead live in full health. They traded 6-month increments until reaching a point of indifference between the two options.

The study included 50 participants who self-reported moderate hair loss on the scalp (42%), no hair loss on the scalp (0%) and eyebrow and eyelash loss (50%). Most participants (70%) reported concealing hair loss by use of make-up or headwear (34%), use of a wig (10%), or both (18%). Other participants reported using hair extensions or styling hair to cover patches of hair loss.

The participants gave lower mean visual analog scale (VAS) scores to clinical vignettes of greater severity, similar to the mean UK public utility values. They gave a mean VAS of 74.3 in the Severity of Alopecia Tool (SALT) 0-10 vignette, 59.0 on the SALT 11–20, 39.4 on the SALT 21-49, 29.6 on the SALT 50-100, and 26.0 on the SALT 50-100 (no eyebrows/eyelashes). They gave a mean VAS score of 58.6 on the caregiver for adolescent SALT 50-100 vignette.1

The investigators found that over a 10-year time horizon, the average patient with AA was willing to trade approximately 5 years of life (mean TTO utility, 0.537; SD, 0.448) to avoid impacts associated with 50–100% scalp hair loss.1

“This study has demonstrated the burden of AA to patients and provided a novel set of patient-derived utility values for HRQOL in AA,” Dixon and colleagues concluded.1 "Over a 10-year time horizon, the average patient with AA is willing to trade off approximately 5 years of life to avoid impacts associated with 50% to 100% scalp hair loss. The similarity in health state utility values derived from both UK patient and general-public populations was demonstrated, confirming the face validity of the vignettes and utility values from each value set. These data could support the economic evaluation of future treatments for AA, especially for HTA agencies that prefer experience-based or patient-derived health state values for economic evaluations."

REFERENCES

1. Dixon, C., Price, T., Gruffydd, E. et al. Patient Validation of Estimation of Health Utility Values in Alopecia Areata. PharmacoEconomics Open (2025). doi:10.1007/s41669-025-00576-0.

2. Pratt CH, King LE, Messenger AG, Christiano AM, Sundberg JP. Alopecia areata. Nat Rev Dis Primers. 2017;3(1):17011. doi: 10.1038/nrdp.2017.11.