Evaluation of Stigma Toward Individuals With Alopecia

Abstract

IMPORTANCEPerceived 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 PARTICIPANTSThis 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 MEASURESThe 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. RESULTSThe 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 RELEVANCEThis 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.

A qualitative interview study to explore adolescents’ experience of alopecia areata and the content validity of sign/symptom patient‐reported outcome measures*

“…This and other studies have demonstrated that hair loss is psychosocially burdensome to patients and time‐consuming and difficult to hide 9,16–22 . Patients have demonstrated proficiency in assessing their own hair loss and informed that near‐complete scalp hair regrowth (≤ 20% missing hair/SALT score ≤ 20) would restore a sense of normality 28,33,36 .…”

“…This and other studies have demonstrated that hair loss is psychosocially burdensome to patients and time-consuming and difficult to hide. 9,[16][17][18][19][20][21][22] Patients have demonstrated proficiency in assessing their own hair loss and informed that near-complete scalp hair regrowth (≤ 20% missing hair/SALT score ≤ 20) would restore a sense of normality. 28,33,36 Therefore, it is not only feasible but critically important to assess the clinical signs of AA, including scalp hair loss, from the patient perspective.…”

“… 1 , 2 , 3 , 4 , 5 AA involves scalp, facial and body hair loss and can cause nail damage (pitted, brittle nails), 6 , 7 , 8 all signs/symptoms associated with significant impairment of health‐related quality of life. 9 , 10 , 11 , 12 , 13 , 14 , 15 The clinical signs of AA, including scalp hair loss, are time‐consuming and often impossible to hide, resulting in patients being perceived as sick, if not gravely ill. 9 , 16 , 17 , 18 , 19 , 20 , 21 , 22 …”

“…[1][2][3][4][5] AA involves scalp, facial and body hair loss and can cause nail damage (pitted, brittle nails), [6][7][8] all signs/symptoms associated with significant impairment of health-related quality of life. [9][10][11][12][13][14][15] The clinical signs of AA, including scalp hair loss, are timeconsuming and often impossible to hide, resulting in patients being perceived as sick, if not gravely ill. 9,[16][17][18][19][20][21][22] The World Health Organization defines adolescence as ages 10-19 years, between childhood and adulthood. 23 The definition of adolescence varies across published AA studies but was defined as ages 12-17 years within this study.…”

The close resemblance between patients with severe alopecia areata and those with cancer: What hair tells us about wellness or grave illness

“…To the Editor: Patients with alopecia areata (AA) are commonly assumed to be sick or have cancer, especially when they have severe loss of scalp and eyebrow or eyelash hair. 1 Many patients report being told by strangers to ''keep up the fight'' or that they will be included in their prayers. Families recount experiences in which they have been given special treatment, such as having a meal paid for or an admission fee waived at a museum or amusement park.…”