Evaluation of Stigma Toward Individuals With Alopecia | Dermatology | JAMA Dermatology | JAMA Network
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Figure 1.  Sample of Computer-Generated Portraits and 2 Versions With Varying Degrees of Alopecia
Sample of Computer-Generated Portraits and 2 Versions With Varying Degrees of Alopecia
Figure 2.  Respondents Who Negatively Endorsed Each of the Questions in the Survey
Respondents Who Negatively Endorsed Each of the Questions in the Survey

Numbers represent percentage of respondents who endorsed each particular survey item by choosing the 2 most negative ratings or desiring the most social distance from the individual pictured in the randomized portrait. Respondent data are grouped by severity of alopecia of the individual pictured.

aRepresents percentage of respondents disagreeing with these statements.

Table 1.  Characteristics of Respondents to an Online Survey of Layperson Stigma Toward Individuals With Alopecia
Characteristics of Respondents to an Online Survey of Layperson Stigma Toward Individuals With Alopecia
Table 2.  Mean Likert Score by Characteristics of Randomly Presented Portraits of Individuals With Varying Severity of Alopecia, by Survey Item Groupa
Mean Likert Score by Characteristics of Randomly Presented Portraits of Individuals With Varying Severity of Alopecia, by Survey Item Groupa
1.
Liu  LY, King  BA, Craiglow  BG.  Health-related quality of life (HRQoL) among patients with alopecia areata (AA): a systematic review.   J Am Acad Dermatol. 2016;75(4):806-812.e3. doi:10.1016/j.jaad.2016.04.035 PubMedGoogle ScholarCrossref
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Dubois  M, Baumstarck-Barrau  K, Gaudy-Marqueste  C,  et al; Quality of Life Group of the French Society of Dermatology.  Quality of life in alopecia areata: a study of 60 cases.   J Invest Dermatol. 2010;130(12):2830-2833. doi:10.1038/jid.2010.232 PubMedGoogle ScholarCrossref
3.
Rencz  F, Gulácsi  L, Péntek  M, Wikonkál  N, Baji  P, Brodszky  V.  Alopecia areata and health-related quality of life: a systematic review and meta-analysis.   Br J Dermatol. 2016;175(3):561-571. doi:10.1111/bjd.14497 PubMedGoogle ScholarCrossref
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Kacar  SD, Soyucok  E, Bagcioglu  E,  et al.  The perceived stigma in patients with alopecia and mental disorder: a comparative study.   Int J Trichology. 2016;8(3):135-140. doi:10.4103/0974-7753.189005 PubMedGoogle ScholarCrossref
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de Hollanda  TR, Sodré  CT, Brasil  MA, Ramos-E-Silva  M.  Quality of life in alopecia areata: a case-control study.   Int J Trichology. 2014;6(1):8-12. doi:10.4103/0974-7753.136748 PubMedGoogle ScholarCrossref
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Reid  EE, Haley  AC, Borovicka  JH,  et al.  Clinical severity does not reliably predict quality of life in women with alopecia areata, telogen effluvium, or androgenic alopecia.   J Am Acad Dermatol. 2012;66(3):e97-e102. doi:10.1016/j.jaad.2010.11.042 PubMedGoogle ScholarCrossref
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Janković  S, Perić  J, Maksimović  N,  et al.  Quality of life in patients with alopecia areata: a hospital-based cross-sectional study.   J Eur Acad Dermatol Venereol. 2016;30(5):840-846. doi:10.1111/jdv.13520 PubMedGoogle ScholarCrossref
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Shi  Q, Duvic  M, Osei  JS,  et al.  Health-related quality of life (HRQoL) in alopecia areata patients—a secondary analysis of the National Alopecia Areata Registry Data.   J Investig Dermatol Symp Proc. 2013;16(1):S49-S50. doi:10.1038/jidsymp.2013.18 PubMedGoogle ScholarCrossref
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Masmoudi  J, Sellami  R, Ouali  U,  et al.  Quality of life in alopecia areata: a sample of Tunisian patients.   Dermatol Res Pract. 2013;2013:983804. doi:10.1155/2013/983804 PubMedGoogle Scholar
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Al-Mutairi  N, Eldin  ON.  Clinical profile and impact on quality of life: seven years experience with patients of alopecia areata.   Indian J Dermatol Venereol Leprol. 2011;77(4):489-493. doi:10.4103/0378-6323.82411 PubMedGoogle ScholarCrossref
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Davey  L, Clarke  V, Jenkinson  E.  Living with alopecia areata: an online qualitative survey study.   Br J Dermatol. 2019;180(6):1377-1389. doi:10.1111/bjd.17463 PubMedGoogle ScholarCrossref
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National Alopecia Areata Foundation. Access Healthcare. Accessed July 5, 2020. https://www.naaf.org/AccessHealthcare
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Li  SJ, Mostaghimi  A, Tkachenko  E, Huang  KP.  Association of out-of-pocket health care costs and financial burden for patients with alopecia areata.   JAMA Dermatol. 2019;155(4):493-494. doi:10.1001/jamadermatol.2018.5218 PubMedGoogle ScholarCrossref
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Desai  S, Manjaly  P, Lee  KJ,  et al.  Utilization of crowdfunding for expenses related to medical hair loss.   J Am Acad Dermatol. Published online September 11, 2020. doi:10.1016/j.jaad.2020.09.008PubMedGoogle Scholar
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Schielein  MC, Tizek  L, Ziehfreund  S, Sommer  R, Biedermann  T, Zink  A.  Stigmatization caused by hair loss—a systematic literature review.   J Dtsch Dermatol Ges. 2020;18(12):1357-1368. doi:10.1111/ddg.14234PubMedGoogle Scholar
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Hankinson  A, McMillan  H, Miller  J.  Attitudes and perceptions of school-aged children toward alopecia areata.   JAMA Dermatol. 2013;149(7):877-879. doi:10.1001/jamadermatol.2013.601 PubMedGoogle ScholarCrossref
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Karras  T; NVIDIA Research. This person does not exist. Accessed July 5, 2019. https://www.thispersondoesnotexist.com
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Morillo  C. Man wearing blue button-up sweater. Accessed May 14, 2019. https://www.pexels.com/photo/man-wearing-blue-button-up-sweater-1181391/
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Pearl  RL, Wan  MT, Takeshita  J, Gelfand  JM.  Stigmatizing attitudes toward persons with psoriasis among laypersons and medical students.   J Am Acad Dermatol. 2019;80(6):1556-1563. doi:10.1016/j.jaad.2018.08.014 PubMedGoogle ScholarCrossref
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Park  J, Kim  DW, Park  SK, Yun  SK, Kim  HU.  Role of hair prostheses (wigs) in patients with severe alopecia areata.   Ann Dermatol. 2018;30(4):505-507. doi:10.5021/ad.2018.30.4.505 PubMedGoogle ScholarCrossref
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Inui  S, Inoue  T, Itami  S.  Psychosocial impact of wigs or hairpieces on perceived quality of life level in female patients with alopecia areata.   J Dermatol. 2013;40(3):225-226. doi:10.1111/1346-8138.12040 PubMedGoogle ScholarCrossref
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    Original Investigation
    March 10, 2021

    Evaluation of Stigma Toward Individuals With Alopecia

    Author Affiliations
    • 1Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts
    • 2Boston University School of Medicine, Boston, Massachusetts
    • 3Tufts University School of Medicine, Boston, Massachusetts
    • 4Department of Public Health Sciences, Loyola University, Chicago, Illinois
    • 5Associate Editor, JAMA Dermatology
    JAMA Dermatol. 2021;157(4):392-398. doi:10.1001/jamadermatol.2020.5732
    Key Points

    Question  What is the prevalence and magnitude of layperson stigma toward individuals with varying degrees of alopecia?

    Findings  In this cross-sectional online survey study of 2015 laypersons’ responses to images of individuals with alopecia, endorsement of every stigma item increased across scales of stereotypes and social distance as the severity of alopecia increased, as did the percentage of respondents believing the individual pictured had a medical condition. Recognition of alopecia as a medical condition varied by the race and sex of the individual pictured and was associated with decreased alopecia-related stigma.

    Meaning  Alopecia-related stigma among laypersons exists across a multitude of social and professional scenarios and may be influenced by recognition of alopecia as a medical condition.

    Abstract

    Importance  Perceived stigma among patients with alopecia is associated with impaired quality of life; however, the magnitude of laypersons’ stigma toward individuals with alopecia is unknown.

    Objective  To determine the prevalence and magnitude of laypersons’ stigma toward individuals with varying degrees of alopecia and whether stigma increases with increased severity of alopecia.

    Design, Setting, and Participants  This was a cross-sectional study using an internet survey administered to a convenience sample of adult respondents in the US participating on the Amazon Mechanical Turk platform. Portrait images of 6 individuals without hair loss were created using artificial intelligence and stock images. Each portrait was edited to create 2 additional versions, 1 with scalp hair loss and 1 with complete hair loss, for a total of 18 images. On January 9 to 10, 2020, the survey presented each internet respondent with 1 randomly selected portrait to be used in answering a series of stigma-related questions from 3 domains: stereotypes, social distance, and disease-related myths; the third domain was presented only to respondents who believed that the individual pictured had a medical condition.

    Main Outcomes and Measures  The main outcome was the prevalence and magnitude of stigma of laypersons toward individuals with alopecia and the percentage of laypersons who believed the individual pictured had a medical condition as recorded in survey responses.

    Results  The survey was completed by 2015 respondents (99.9% completion rate) with a mean age of 37 (range, 18-78) years; 1014 (50.3%) were men; 1596 (79.2%) were White; and 1397 (69.3%) had a college or postcollege education. Endorsement of every stigma item increased as alopecia severity increased (2.4%-27.6%). Absolute change on the stereotype (0.5-0.6) and social distance scales (0.2-0.5) also increased, indicating more stigma. The percentage of respondents believing the individual pictured had a medical condition increased as alopecia severity increased (33.6%-75.7%; P < .001). Among the subgroup of respondents who were asked to rate their agreement with disease-related myths, the absolute change on the myth scale decreased as alopecia severity increased, indicating decreased stigma (−0.7 to −1.2).

    Conclusions and Relevance  This cross-sectional survey study found that stigmatizing attitudes of laypersons toward patients with alopecia exist across a multitude of social and professional scenarios. Stigma prevalence and magnitude vary by alopecia severity and possibly by whether alopecia is believed to be a medical condition.

    Introduction

    Patients with alopecia may experience impaired quality of life (QOL) from perceived disease-related stigma. Despite continued evidence of the association between stigma and QOL,1-10 its importance may be diminished or dismissed by observing adults (laypersons), as well as by the physicians caring for these patients.11 There is a presumption that the experience of alopecia is merely cosmetic.5,11,12 Reimbursements for the medications, hairpieces, and wigs that may mitigate stigma are often limited or denied, adding to the patient’s financial burden.13,14

    While numerous studies have examined the association of perceived stigma with impaired QOL among patients with alopecia,15 the prevalence and magnitude of alopecia-related stigma by laypersons toward affected patients is unknown.16 The present study sought to measure the prevalence and magnitude of layperson stigma toward individuals with varying degrees of alopecia and to analyze how the magnitude of stigma may be influenced by the characteristics of both the affected individuals and the laypersons.

    Methods

    This cross-sectional study surveyed a convenience sample of adult respondents in the US using an online survey that randomly displayed 1 of 18 computer-generated portraits of individuals who varied by race, sex, and degree of hair loss. Respondents’ stigma was measured using the portrait and their answers to questions grouped into 3 domains: stereotypes, social distance, and disease-related myths.

    Approval for this study was obtained from the Mass General Brigham Institutional Review Board. Prior to accessing the survey, participants reviewed an online fact sheet explaining the research study and gave their consent by agreeing to the terms. Respondents who completed a survey were compensated 25 cents.

    Image Creation

    Portraits of 6 different adults without alopecia—2 White men, 2 White women, 1 Black man, and 1 Black woman—were generated using artificial intelligence17 and images purchased from a stock photography website.18 To represent varying degrees of alopecia, each original portrait was edited to create 2 additional versions, 1 with all scalp hair removed and 1 with complete hair loss (scalp hair, eyebrows, eyelashes, and facial hair removed), producing a total of 18 portraits (Figure 1).

    Survey Design and Measures

    To collect data on laypersons’ opinions of the individuals pictured, a survey was created using Qualtrics XM (Qualtrics LLC, SAP America Inc). The survey randomly displayed 1 of the 18 portrait images followed by a series of questions (eTable 1 in the Supplement).

    To assess stereotypes associated with the individual pictured, respondents were presented with 6 pairs of opposing adjectives derived from a previously published scale.19 To assess the level of social distance desired from the individual pictured, respondents answered 6 questions derived from previous studies that analyzed laypersons’ opinions on being in various social situations with a described or photographed individual.20,21 For both question sets, responses were measured on a 5-point Likert scale with higher scores indicating less stigma.

    Next, respondents indicated whether they believed the individual pictured had a medical condition. Those answering yes were presented with an additional 6 questions on a 5-point Likert scale (higher scores indicating less stigma), assessing their agreement with common myths22 about patients with alopecia. Lastly, all respondents provided self-reported demographic information, including age, sex, race/ethnicity, employment status, education level, and familiarity with alopecia areata.

    Survey Distribution

    The survey link was distributed via Amazon Mechanical Turk (https://www.mturk.com/), a crowdsourcing platform that outsources jobs to workers with predetermined qualifications who complete internet-based tasks for a fee.23,24 Survey responses were limited to 1 per internet protocol address to limit the likelihood of a worker providing multiple responses. The survey was available on Amazon Mechanical Turk from January 9, 2020, at 9:00 am to January 10, 2020, at 6:24 pm, Eastern Standard Time, for all workers 18 years and older in the US.

    Hypotheses and Outcome Measures

    The primary analyses were to measure the prevalence and magnitude of layperson stigma toward individuals with alopecia and the percentage of laypersons believing that the individual pictured had a medical condition. We hypothesized that as alopecia severity increased, scores on all 3 scales (stereotype, social distance, and myth) would decrease (more stigma) and the percentage of those believing that the individual pictured had a medical condition would increase. The secondary analyses were to determine modifiers of stigma based on demographics of both the individuals pictured and the survey respondents.

    Statistical Analysis

    Study analyses were performed from February 1, 2020, to October 14, 2020. Descriptive statistics were computed with means and SDs for all continuous variables and counts with percentages for nominal variables. The absolute change in stigma score was calculated for each portrait’s sex and race category by subtracting the mean score of the complete hair loss version from the mean score of the original version. The absolute change in medical condition affirmation was calculated for each portrait by sex and race category by subtracting the percentage of respondents who affirmed that the original version had a medical condition from the percentage who did so for the complete hair loss version of the portrait with the same demographics. In both calculations, the expected absolute change based on the hypotheses would be a positive number, indicating that stigma and medical condition affirmation both increased as degree of alopecia increased. The absolute change in stigma score was calculated and adjusted for respondents’ characteristics (sex, race, education, employment, and familiarity with alopecia areata), and regression models were used to evaluate whether the absolute change in stigma scores varied by sex and/or race.

    Additionally, the responses to the stereotype and social distance 5-point Likert scales were dichotomized, with the 2 lowest options (ie, most stigma) categorized as endorsing that particular question and the remaining 3 Likert options categorized as not endorsing.24 Prevalence of stigma was defined as the proportion endorsing stereotypes or social distance for each question.

    A sensitivity analysis was performed between sets of portraits with identical race and sex by evaluating a generalized linear mixed model separately for each delta (stereotypes, social distance, medical condition, and myth). This analysis included random intercepts to account for correlation owing to repeated measures by respondent, fixed effects for sex and race, and respondent characteristics—sex, race, education, employment, and familiarity with alopecia areata. All analyses were conducted in R, version 4.0 (The R Foundation for Statistical Computing). Analysis of variance F tests were used for analyses, and 2-sided P ≤ .05 was considered to be significant.

    Results

    In all, 2017 individuals accessed the survey, providing 2015 completed surveys (99.9% completion rate). Respondents had a mean age of 37 (SD, 12; range, 18-78) years; half were men (n = 1014 [50.3%]); and most were White (n = 1596 [79.2%]) and/or non-Hispanic (n = 1728 [85.8%]), employed (n = 1635 [81.1%]), and had a college or postcollege education (n = 1397 [69.3%]) (Table 1). Most respondents had never heard of alopecia areata (n = 923 [45.8%]) or had heard of it but were unfamiliar with the condition (n = 704 [34.9%]).

    Quantifying Stigma Prevalence

    The percentage of respondents endorsing each individual stereotype and social distance item increased as alopecia severity increased (Figure 2). Among stereotype items, the largest change in endorsement prevalence from the original version to the complete hair loss version was seen for “sick” (27.6% increase) and “unattractive” (16.5% increase). On the social distance scale, the 2 largest increases in endorsement were an 18.3% increase in respondents disagreeing with the statement, “I would find the person in this photo attractive,” and a 6.9% increase in respondents disagreeing with the statement, “I wouldn’t mind having physical contact with the person in this photo.”

    Quantifying Stigma Magnitude

    For all portrait categories, negative stereotype and a desire for social distance increased as alopecia severity increased (Table 2). The degree of increase in stigma from the original version to the complete hair loss version depended on the race and sex of the individual pictured. When adjusted for respondent characteristics, the absolute change on the stereotype scale ranged from 0.5 to 0.6 (P = .06; see supporting data in eTable 2 in the Supplement). The adjusted absolute change on the social distance scale was 0.2 for all race and sex categories except the Black man, which was 0.5 (95% CI, 0.3-0.7; P = .04).

    Medical Condition and Alopecia Myths

    Increasing alopecia severity across all portrait categories was associated with an increased belief among respondents that the individual pictured had a medical condition. The adjusted absolute change in percentage of respondents believing the individual had a medical condition varied depending on which version was shown, ranging from 33.6% (95% CI, 23.7%-43.6%) for the Black woman portrait sets to 75.7% (95% CI, 69.6%-81.8%) for the White man sets (P < .001).

    For respondents who answered yes to the medical condition question, agreement with disease-related myths decreased as disease severity worsened. This trend was also seen for all race and sex portrait categories, with the adjusted absolute change ranging from −0.7 (95% CI, −1.8 to 0.5) for the Black man portrait set to −1.2 (95% CI, −1.5 to −0.8) for the Black woman portrait set (P = .71).

    Sensitivity Analysis

    A sensitivity analysis among portrait sets of the same race and sex (ie, the 2 White men and the 2 White women) was performed. No statistically significant differences were found in responses to the stereotype, social distance, medical condition, or myth questions (eTable 3 in the Supplement).

    Discussion

    These findings suggest that laypersons may stigmatize individuals with alopecia, that their stigma increases with alopecia severity, and that it can be influenced by the patient’s race and sex. To our knowledge, the literature to date has focused on the association of hair loss with the patient’s own feelings of confidence, worthiness, and self-esteem; however, the findings of the present study suggest that patients with alopecia may indeed face substantial stigma from laypersons regarding hair loss. Patients with the most severe hair loss were thought to be sick (29.8%), not attractive (27.2%), contagious (9.9%), unintelligent (3.9%), and dirty (3.9%). These data findings confirm that hair loss can have negative associations with the way others perceive individuals with alopecia, which may affect their ability to connect with others.

    This stigma from hair loss may extend to the workplace. Respondents reported that they would not feel comfortable having physical contact with patients with alopecia (16.9%) or hiring them for a job (6.2%). These findings confirm the concerns of patients with alopecia who have expressed fears that their disease could affect their professional careers,11 and reinforce the need for improved medical therapies for hair loss. In the interim, these findings should also encourage advocacy for insurance coverage of hairpieces and wigs for patients with alopecia. Although the benefit of wigs for confidence and QOL of patients with alopecia has been demonstrated,25-27 the effectiveness of this intervention on reduction of stigma is an area for future studies.

    In this study, the increase in the percentage of respondents believing that the individual pictured had a medical condition significantly differed among the various portrait categories, suggesting that race and sex factor into whether alopecia is perceived as a medical condition. This variation is supported by the results of this study’s sensitivity analysis, which found no significant differences in responses on any survey scale, including the medical condition question, when comparing portrait sets of identical race and sex (eTable 3 in the Supplement).

    These results also suggest that perception of alopecia as a medical condition reduces stigma. As indicated in the Methods section, the myth scale was presented to only the subgroup of survey respondents who believed that the individual pictured had a medical condition. Among this subgroup, agreement with alopecia-related myths decreased with increasing alopecia severity, contrasting with both the stereotype and social distance results observed in the entire study population.

    These findings suggest that recognizing alopecia as a medical condition is important to how laypersons perceive people with alopecia. The findings also question how much influence that recognition could have on stigmatizing attitudes. That 80.7% of respondents were unfamiliar with alopecia suggests there is ample opportunity to improve knowledge and understanding of the condition among the general population. Increasing alopecia awareness and understanding may have a positive bearing on how these patients are perceived.

    Limitations

    These findings must be interpreted in the context of the study design. Analysis was not performed on the reasons behind respondents’ answers. Survey respondents were addressing a hypothetical interaction with a small sample representative of individuals with alopecia; however, reactions to a larger representative sample or real individuals with alopecia may be different. In addition, the use of a crowdsourcing platform introduces potential convenience sampling bias and does not allow determination of the true response rate.

    Conclusions

    Stigmatizing attitudes of laypersons toward patients with alopecia exist across a multitude of social and professional scenarios. The prevalence and magnitude of this stigma varies by alopecia severity. Characteristics of the affected individuals appear to be associated with whether alopecia is recognized as a medical condition, and when it is, alopecia-related stigma may decrease. Medical and complementary treatments such as wigs may be able to mitigate alopecia-associated stigma.

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    Article Information

    Accepted for Publication: December 29, 2020.

    Published Online: March 10, 2021. doi:10.1001/jamadermatol.2020.5732

    Corresponding Author: Arash Mostaghimi, MD, MPA, MPH, Department of Dermatology, Brigham and Women’s Hospital, Harvard Medical School, 221 Longwood Ave, Boston, MA 02115 (amostaghimi@bwh.harvard.edu).

    Author Contributions: Drs Mostaghimi and Zhou had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Drs Huang and Mostaghimi contributed equally to the study.

    Study concept and design: Creadore, Manjaly, Tkachenko, Huang, Mostaghimi.

    Acquisition, analysis, or interpretation of data: Creadore, Li, Tkachenko, Zhou, Joyce, Huang, Mostaghimi.

    Drafting of the manuscript: Creadore.

    Critical revision of the manuscript for important intellectual content: All authors.

    Statistical analysis: Creadore, Li, Zhou, Joyce, Mostaghimi.

    Obtained funding: Mostaghimi.

    Administrative, technical, or material support: Creadore, Li, Tkachenko, Huang, Mostaghimi.

    Study supervision: Huang, Mostaghimi.

    Conflict of Interest Disclosures: Dr Huang reported royalty payments from Pfizer for licensing of the ALTO tool; consulting fees from Concert and Pfizer; and participation in alopecia-related clinical trials conducted or supported by Aclaris, Concert, Incyte, and Lilly, all outside the submitted work. Dr Mostaghimi reported royalty payments from Pfizer for licensing of the ALTO tool; consulting fees from AbbVie, Concert, Digital Diagnostics, Pfizer, and Lilly; participation in alopecia-related clinical trials conducted or supported by Aclaris, Concert, Incyte, and Lilly; and equity in Hims and Hers, all outside the submitted work. Ms Manjaly reported a student internship award from the National Alopecia Areata Foundation. No other disclosures were reported.

    Funding/Support: This study was funded by the Department of Dermatology, Brigham and Women’s Hospital, Boston, Massachusetts.

    Role of the Funder/Sponsor: Brigham and Women’s Hospital had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

    Disclaimer: Dr Mostaghimi is an Associate Editor of JAMA Dermatology but was not involved in any of the decisions regarding review of the manuscript or its acceptance.

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