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. 2023 Jul;13(7):1503-1515.
doi: 10.1007/s13555-023-00941-z. Epub 2023 Jun 8.

The Invisible Impact of a Visible Disease: Psychosocial Impact of Alopecia Areata

Natasha Mesinkovska  1 , Brittany Craiglow  2 , Susan G Ball  3 , Paula Morrow  4 , Sarah G Smith  4 , Evangeline Pierce  4 , Jerry Shapiro  5
Affiliations

The Invisible Impact of a Visible Disease: Psychosocial Impact of Alopecia Areata

Natasha Mesinkovska et al. Dermatol Ther (Heidelb). 2023 Jul.

Abstract

Introduction: The physical impact of alopecia areata (AA) is visible, but the psychological and social consequences and emotional burden are often underrecognized.

Methods: In this cross-sectional study, 547 participants recruited via the National Alopecia Areata Foundation completed a survey encompassing demographics; AA illness characteristics; and five patient-reported outcome measures on anxiety and depression, perceived stress, psychological illness impact, stigma, and quality of life (QoL). Differences in disease severity subgroups were assessed via analysis of variance (ANOVA) and t tests.

Results: Mean age was 44.6 years, and 76.6% were female. Participants with more severe hair loss tended to report longer duration of experiencing AA symptoms (P < 0.001). Overall, participants reported negative psychological impact, emotional burden, and poor QoL due to AA. Participants with 21-49% or 50-94% scalp hair loss reported greater psychological impact and poorer QoL than those with 95-100% scalp hair loss (most parameters P < 0.05). Similar results were observed for eyebrow/eyelash involvement subgroups.

Conclusions: These results suggest that participants with AA experience emotional burden, negative self-perception, and stigma, but the impact of AA is not dependent solely on the amount of hair loss. Lower impact among participants with 95-100% scalp hair loss may indicate that they have adapted to living with AA.

Keywords: Alopecia areata; Disease severity; Quality of life; Stigma.

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Conflict of interest statement

Mesinkovska N serves as Chief Scientific Officer for the National Alopecia Areata Foundation and has received honoraria for advisory boards for Arena Pharmaceuticals, Concert Pharmaceuticals, Eli Lilly and Company, and Nutrafol. Craiglow B has received honoraria and/or fees from Aclaris Therapeutics Inc, Arena Pharmaceuticals, Pfizer, and Sanofi Genzyme; she has served on speaker bureaus for Eli Lilly and Company, Pfizer, Regeneron, and Sanofi Genzyme. Ball S, Morrow P, and Pierce E are employees of Eli Lilly and Company and may hold stock and/or stock options in the company. Smith SG was an employee of Eli Lilly and Company when the study was conducted and may hold stock and/or stock options in the company. Shapiro J is a consultant or clinical trial investigator for Pfizer Inc. and a consultant for Eli Lilly and Company.

Figures

Fig. 1
Fig. 1
Psychological impact of alopecia areata by gender. AA-QLI Alopecia Areata Quality of Life Index Questionnaire, NIH National Institute of Health, HADS Hospital Anxiety and Depression Scale, Neuro-QoL neurology quality of life. **Significant at P < 0.05
Fig. 2
Fig. 2
Psychosocial impact of AA by disease severity and location: A by severity of current scalp hair loss, B by severity of current eyebrow hair loss, and C by severity of current eyelash hair loss. Pairwise comparisons were performed for each subgroup, but P values for only moderate area scalp hair loss versus nearly all or all scalp hair loss, large area scalp hair loss versus nearly all or all scalp hair loss, minimal gap(s) or a minimal amount of thinning in at least one of my eyebrows versus no or barely any eyebrow hairs, large gap(s) or a large amount of thinning in at least one of my eyebrows versus no or barely any eyebrow hairs, minimal gap or minimal gaps along the eyelids versus no or barely any eyelash hair, and large gap or large gaps along the eyelids versus no or barely any eyelash hair are represented. *P < 0.05, **P < 0.01, ***P < 0.001. AA-QLI Alopecia Areata Quality of Life Index Questionnaire, HADS Hospital Anxiety and Depression Scale, LS Least Squares, NIH National Institutes of Health, PROMIS Patient-Reported Outcome Measurement Information System, QoL quality of life, SE standard error
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