Stigmatizing Alopecia—Perspectives of a Bald Dermatologist

Goh, Carolyn

doi:10.1001/jamadermatol.2020.5731

Cited by 6 publications

(11 citation statements)

References 15 publications

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“…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 .…”

Section: Discussionmentioning

confidence: 90%

“…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.…”

Section: Discussionmentioning

confidence: 99%

“… 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 …”

mentioning

confidence: 99%

“…[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.…”

mentioning

confidence: 99%

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

et al. 2022

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Summary Background The content validity (appropriateness and acceptability) of patient‐reported outcome (PRO) measures for scalp hair loss, eyebrow loss, eyelash loss, nail damage and eye irritation has been demonstrated in adults with alopecia areata (AA) but not adolescents. Objectives To explore the content validity of the suite of AA PRO measures and accompanying photoguides in an adolescent sample. Methods Semi‐structured, 90‐min, combined concept elicitation and cognitive interviews were conducted face‐to‐face with adolescents who experienced ≥ 50% AA‐related scalp hair loss. Transcripts underwent thematic and framework analysis. Results Eleven adolescents (aged 12–17 years, 55% female, 45% nonwhite) diagnosed with AA for 5·9 years (mean) participated. Participants had 69·6% scalp hair (mean) and current eyebrow (82%) and/or eyelash loss (82%) and/or nail involvement (36%). Adolescents reported scalp, eyebrow and eyelash hair loss as their top three most bothersome signs/symptoms. Despite mostly accepting their AA, impacts related to visible areas of hair loss were prominent. Participants demonstrated good understanding and appropriate use of the PRO measures, and advocated including hair loss percentages alongside descriptive categories in the Scalp Hair Assessment PRO™. Results confirmed treatment success thresholds established with adults: achievement of ≤ 20% scalp hair loss, no/minimal eyebrow and eyelash loss, no/a little nail damage and eye irritation (PRO measure categories 0 or 1). Conclusions The Scalp Hair Assessment PRO™, PRO Measure for Eyebrows™, PRO Measure for Eyelashes™, PRO Measure for Nail Appearance™ and PRO Measure for Eye Irritation™ and accompanying photoguides are fit‐for‐purpose self‐reported measures of AA signs/symptoms that are impactful to adolescents with AA.

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Section: Discussionmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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

et al. 2022

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“…[6] Most skin diseases are potentially stigmatizing because they are visible. [7] Yet skin diseases, especially hair loss, are often deemed cosmetic, leading to undertreatment by clinicians and substantial psychological and financial burdens. The skin diseases considered stigmatizing are mostly leprosy, alopecia, vitiligo, and others visible.…”

mentioning

confidence: 99%

Changing face of dermatology – A paradigm shift

Thappa

2021

CSDM

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Over the last three and half-decade of my life, I have seen the changes in dermatology and marked paradigm shift towards procedural dermatology and cosmetic dermatology. Dermatosurgery clinics started in 1996, and lasers were procured in 2009, setting the tone for laser and cosmetic dermatology at Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry. Cosmetic dermatology (aesthetic medicine/medical aesthetics) has now been recognized as a sub-specialty of dermatology. Dermatologists have supremacy over other aesthetic practitioners as they also treat visible as well as stigmatizing skin disorders. In the last two decades in India, more and more women are taking up dermatology to pursue aesthetic practice. Women in dermatology have started their association, the Women’s Dermatologic Society, and their journal, International Journal of Women’s Dermatology (IJWD). Skin lightening products are overwhelmingly used by women and are one of the world’s largest markets. Nowadays, aesthetic surgical procedures are done with a motive to earn profits. Cosmetology has gained tremendous interest in the world, especially in the United States of America. Much of its recognition is due to scientific research in the development of imaging techniques, drug therapy, and other nonsurgical methods lessening downtime for the patients. The focus in dermatology is shifting gradually from diseased skin to desired skin which people prefer. Hence, the journal CosmoDerma, gives cosmetology its due place. Moreover, there is an increase in the anti-ageing population in this world who don’t want their face wrinkles and aging skin changes. In the absence of world wars in recent times and the increasing longevity of man, the cosmetic industry/aesthetic industry is surging ahead despite the COVID 19 pandemic. Accreditation system to regulate the practice of cosmetology practice needed to be put in place in all countries. Many of these cosmetology practitioners are inadequately equipped to perform cosmetology procedures. There is a need for structured training and accreditation for cosmetic dermatology, aesthetic surgery, dermatosurgery, use of lasers, and hair transplantation.

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Beyond health-related quality of life: initial psychometric validation of a new scale for addressing the gap in assessing the full range of alopecia areata psychosocial burden

Gorbatenko-Roth

Wood

Johnson

et al. 2023

British Journal of Dermatology

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Background Patients with alopecia areata (AA) report a broad range of psychosocial outcomes beyond those assessed in existing health-related quality of life measures. Yet, to date, no psychometrically validated scale based on patient-reported outcomes (PROs) appears to exist to comprehensively measure these AA-specific psychosocial outcomes. Objectives The objective of this study was to develop such a scale, the Scale of Alopecia Areata Distress (SAAD), and to provide its initial validation evidence. Methods Using existing qualitative research on PROs for patients with AA, a pool of 144 items was generated and subsequently reviewed for relevance, redundancy, clarity and comprehensiveness by subject matter experts in AA psychosocial impacts and the research team. This review resulted in a reduced pool of 122 items, which was then administered to adult patients with AA residing in the USA. Exploratory Factor Analysis using Principal Axis Factoring extraction with oblique rotation identified the SAAD’s underlying factor structure. To reduce the SAAD item length, additional item-reduction strategies were used. Results There were 392 participants who responded to the 122 items, each with four or fewer missing item responses. Three iterations of the data analysis plan resulted in a 41-item SAAD with seven underlying factors of psychosocial impact: Emotional and Cognitive Functioning, Romantic Relationships, Family Relationships, Primary Life Responsibilities, Non-Primary Life Responsibility Activities, Stigma, and Self-Perception Change. Each factor demonstrated acceptable to high levels of internal consistency reliability. Conclusions Initial validation evidence of the SAAD-41 scale supports its potential as a comprehensive measure of AA-related psychosocial distress for US-based adults. Further scale validation is needed.

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Stigmatizing Alopecia—Perspectives of a Bald Dermatologist

Abstract: Kimball AB, Sobell JM, Zouboulis CC, et al. HiSCR (Hidradenitis Suppurativa Clinical Response): a novel clinical endpoint to evaluate therapeutic outcomes in patients with hidradenitis suppurativa from the placebo-controlled portion of a phase 2 adalimumab study.

Cited by 6 publications

References 15 publications

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

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

Changing face of dermatology – A paradigm shift

Beyond health-related quality of life: initial psychometric validation of a new scale for addressing the gap in assessing the full range of alopecia areata psychosocial burden

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