Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Amy S Paller; Stephanie M Rangel; Sarah L Chamlin; Aleena Hajek; Sheshanna Phan; Marcia Hogeling; Leslie Castelo-Soccio; Irene Lara-Corrales; Lisa Arkin; Leslie P Lawley; Tracy Funk; Fabiana Castro Porto Silva Lopes; Richard J Antaya; Michele L Ramien; Karina L Vivar; Joyce Teng; Carrie C Coughlin; Wingfield Rehmus; Deepti Gupta; Lionel Bercovitch; Sarah L Stein; Christina Boull; Wynnis L Tom; Marilyn G Liang; Raegan Hunt; Minnelly Luu; Kristen E Holland; Jennifer J Schoch; David Cella; Jin-Shei Lai; James W Griffith

doi:10.1001/jamadermatol.2024.0594

. 2024 Apr 24;160(6):621–630. doi: 10.1001/jamadermatol.2024.0594

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Amy S Paller ^1,^2,^✉, Stephanie M Rangel ¹, Sarah L Chamlin ^1,², Aleena Hajek ¹, Sheshanna Phan ¹, Marcia Hogeling ³, Leslie Castelo-Soccio ⁴, Irene Lara-Corrales ⁵, Lisa Arkin ⁶, Leslie P Lawley ⁷, Tracy Funk ⁸, Fabiana Castro Porto Silva Lopes ⁹, Richard J Antaya ¹⁰, Michele L Ramien ¹¹, Karina L Vivar ^1,², Joyce Teng ¹², Carrie C Coughlin ¹³, Wingfield Rehmus ¹⁴, Deepti Gupta ¹⁵, Lionel Bercovitch ¹⁶, Sarah L Stein ¹⁷, Christina Boull ¹⁸, Wynnis L Tom ¹⁹, Marilyn G Liang ²⁰, Raegan Hunt ²¹, Minnelly Luu ²², Kristen E Holland ²³, Jennifer J Schoch ²⁴, David Cella ¹, Jin-Shei Lai ¹, James W Griffith ¹, for the Pediatric Dermatology Research Alliance

¹Departments of Dermatology and Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, Illinois

²Department of Pediatrics, Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, Illinois

³Department of Medicine/Dermatology, University of California, Los Angeles

⁴Department of Pediatric Dermatology, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

⁵Department of Pediatric Dermatology, The Hospital for Sick Children, Toronto, Ontario, Canada

⁶Department of Pediatric Dermatology, University of Wisconsin School of Medicine and Public Health, Madison

⁷Department of Dermatology, Emory University, Atlanta, Georgia

⁸Department of Dermatology, Oregon Health & Science University, Portland, Oregon

⁹Department of Medicine/Dermatology, Dell Medical School, University of Texas at Austin

¹⁰Department of Dermatology, Yale University, New Haven, Connecticut

¹¹Department of Pediatrics, Alberta Children’s Hospital, Calgary, Alberta, Canada

¹²Department of Dermatology, Stanford University School of Medicine, Stanford, California

¹³Department of Medicine/Dermatology, Washington University School of Medicine in St Louis, St Louis, Missouri

¹⁴Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada

¹⁵Department of Pediatric Dermatology, Seattle Children’s Hospital, University of Washington School of Medicine, Seattle

¹⁶Department of Pediatric Dermatology, Hasbro Children’s Hospital, Brown University, Providence, Rhode Island

¹⁷Departments of Medicine/Dermatology and Pediatrics, University of Chicago, Chicago, Illinois

¹⁸Department of Dermatology, University of Minnesota, Minneapolis

¹⁹Department of Pediatric Dermatology, Rady’s Children’s Hospital, University of California, San Diego

²⁰Department of Pediatric Dermatology, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts

²¹Department of Dermatology, Texas Children’s Hospital, Baylor College of Medicine, Houston

²²Department of Pediatric Dermatology, Children’s Hospital Los Angeles, Los Angeles

²³Department of Pediatric Dermatology, Children’s Wisconsin, Medical College of Wisconsin, Milwaukee

²⁴Department of Pediatric Dermatology, University of Florida, Gainesville

Group Information: Pediatric Dermatology Research Alliance members appear at the end of the article.

Accepted for Publication: February 16, 2024.

Published Online: April 24, 2024. doi:10.1001/jamadermatol.2024.0594

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Corresponding Author: Amy S. Paller, MD, Department of Dermatology, Feinberg School of Medicine, Northwestern University, 676 N St Clair St, Ste 1600, Chicago, IL 60611 (apaller@northwestern.edu).

Author Contributions: Drs Paller and Rangel 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.

Concept and design: Paller, Rangel, Chamlin, Lara-Corrales, Arkin, Teng.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Paller, Rangel, Hajek, Phan, Boull, Griffith.

Critical review of the manuscript for important intellectual content: Paller, Rangel, Chamlin, Hogeling, Castelo-Soccio, Lara-Corrales, Arkin, Lawley, Funk, Castro Porto Silva Lopes, Antaya, Ramien, Vivar, Teng, Coughlin, Rehmus, Gupta, Bercovitch, Stein, Boull, Tom, Liang, Hunt, Luu, Holland, Schoch, Cella, Lai, Griffith.

Statistical analysis: Rangel, Chamlin, Lai, Griffith.

Obtained funding: Paller, Hogeling.

Administrative, technical, or material support: Paller, Rangel, Hogeling, Arkin, Castro Porto Silva Lopes, Schoch, Griffith.

Supervision: Paller, Rangel, Chamlin, Lara-Corrales, Arkin, Teng, Boull, Liang, Luu.

Conflict of Interest Disclosures: Dr Paller reported receiving grants from the Pediatric Dermatology Research Alliance to the institution during the conduct of the study; personal fees from Aegerion Pharma, Azitra, BioCryst, Boehringer-Ingelheim, Bristol Myers Squibb, Eli Lilly, Janssen, Johnson & Johnson, Krystal, LEO Pharma, Novartis, Primus, Regeneron, Sanofi/Genzyme, Seanergy, TWI Biotechnology, and UCB Honoraria; grants from AbbVie, Applied Pharma Research, Dermavant, Eli Lilly, Incyte, Janssen, Krystal, Regeneron, and UCB to institution, and serving with financial compensation on the data safety monitoring boards of AbbVie, Abeona, Catawba, Galderma, and InMed outside the submitted work. Dr Chamlin reported honorarium from Sanofi Regeneron outside the submitted work. Dr Lara-Corrales reported receiving grants from PeDRA during the conduct of the study. Dr Arkin reported funding to the institution from Eli Lily Amgen for clinical trials, and personal fees from Sanofi/Regeneron outside the submitted work. Dr Funk reported receiving grants from Pediatric Dermatology Research Alliance during the conduct of the study; institutional support for clinical trial from and consulting fees for advisory board participation form Arcutis, institutional support for clinical trial from AbbVie Inc, institutional support for clinical trial from Palvella Therapeutics, and institutional support for clinical trials, and consulting fees from Sanofi Genzyme outside the submitted work. Dr Antaya reported receiving personal fees for serving on advisory boards from Verrica Scientific and Sanofi, and consultant fees from Henkel and Micreos outside the submitted work. Dr Ramien reported receiving personal fees from Sanofi, Eli Lilly, Pfizer, and Leo Pharma outside the submitted work; and volunteers as Canadian Dermatology Association president, on the Camp Liberte board of directors, and on the Canadian Dermatology Foundation board of directors. Dr Rehmus reported receiving speaker’s fees from Novartis, Pfizer, and Cerave; and advisory board fees from AbbVie, Leo and Incyte outside the submitted work. Dr Boull reported receiving advisory board fees from Alexion Pharma outside the submitted work. Dr Tom reported receiving grants from the Pediatric Dermatology Research Alliance, institutional grants from AbbVie, Dermira, Incyte, Janssen, Eli Lilly, Pfizer, and Regeneron;, and consultant fees from LEO Pharma. Dr Hunt reported receiving grants from Rhythm Pharmaceuticals; consultant fees from Dermavant, Verrica, and Amryt; serving on the data safety monitoring board for Timber Pharmaceuticals and medical advisory board for holding stock in GlycosBio Inc; and receiving royalties from Up To Date Inc. Dr Holland reported serving as an investigator for Pfizer, Amgen Investigator, Incyte, Sanofi, AbbVie, and Lilly outside the submitted work, and the study was supported by subcontracts between the primary site (Northwestern) and the other sites. Dr Cella reported receiving grants from the National Institutes of Health during the conduct of the study. Dr Griffith reported receiving funding to the institution for research from the National Institutes of Health and Gilead, not related to this work; and funding from Pfizer and the National Eczema Association on the creation of patient decisions aids and pilot interventions in the domain of atopic dermatitis. No other disclosures were reported.

Funding/Support: The study was funded through a grant from the Pediatric Dermatology Research Alliance (PeDRA). The project was supported by several sources that contributed to PeDRA, had no direct input into study decisions, and had no contact with study investigators. These included Regeneron Pharmaceuticals, Immunex Corporation, the EB Medical Research Foundation, the EB Research Partnership, the National Eczema Association, the National Psoriasis Foundation, the Sturge-Weber Foundation, the National Alopecia Areata Foundation, and the Foundation for Ichthyosis and Related Skin Types.

Role of the Funder/Sponsor: The funding organizations 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.

Group Information: The Pediatric Dermatology Research Alliance: Ladan Afifi, BS (University of California, Los Angeles), Aanchal Bahl, BS (Northwestern University), Danielle Bice, BS (Northwestern University), Anna Bruckner, MD (University of Colorado), Talia Canter, BS (Northwestern University), Carole Cheng, MD (University of California, Los Angeles), Lucia Diaz, MD (University of Texas, Austin), Elizabeth Dupuy, MD (University of California, Los Angeles), Beth Drolet, MD (University of Wisconsin), Hanna Fadzeyeva, BS (Hospital for Sick Children of Toronto), Esteban Fernandez, MD (Ohio State University), Sharon Glick, MD (SUNY Downstate), Katya Harfmann, MD (Ohio State University), Elena B. Hawryluk, MD (Harvard University), Meagan Hughes, MD (University of Southern California), Stephen Humphrey, MD (Medical College of Wisconsin), Thy Huynh, MD (University of Mississippi), Madison Jones, BS (University of Southern California), Nourine Kamili, BS (Emory University), Erika Koh, BS (Oregon Health Sciences University), Lacey Kruse, MD (Ann and Robert H. Lurie Children’s Hospital of Chicago), Joseph Lam, MD (University of British Columbia), James Lancaster, MD (Washington University), Margaret Lee, MD (Boston University), Moise L. Levy, MD (University of Texas, Austin), Michael Lor, BS (University of California, Los Angeles), Kari Martin, MD (University of Missouri), Sylvia Martinez-Cabriales, MD (University of Calgary), Audrey Nguyen, BS (University of Minnesota), Judy O’Haver, PhD, RN (Phoenix Children’s Hospital), Brianna Olamiju, BS (Yale University), Helen Park, BS (University of California, San Diego), Vidhi Patel, BS (Northwestern University), Sneha Rangu, BS (Children’s Hospital of Philadelphia), Rakshanda Razi, BS (Hospital for Sick Children), Adena Rosenblatt, MD (University of Chicago), Xavier Sanchez Flores, MD (Boston Children’s Hospital), Dawn Siegel, MD (Stanford University), Nanette Silverberg, MD (Mount Sinai Medical School), Megha Tollefson, MD (Mayo Clinic), and Jennifer Tran, BS (University of Wisconsin).

Data Sharing Statement: See Supplement 2.

Additional Contributions: We dedicate this article to the many thousands of children with highly visible skin disorders who experience stigma. We acknowledge the PeDRA and its administrative leadership, especially Michael Siegel, MD (PeDRA), for supporting and moving forward this study. We thank representatives from advocacy groups for patients who served on the Council of Advocates, providing advice about study planning and feedback about data. In total, PeDRA members and staff at 32 institutions participated, in addition to the authors of the article report herein (predetermined based on contribution), we acknowledge the individuals who also helped to bring these data forward.

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Corresponding author.

PMCID: PMC11044010 PMID: 38656377

Key Points

Question

How is the extent of stigmatization associated with disease visibility, severity, mental health, and quality of life in children and adolescents with chronic skin disorders?

Findings

In this cross-sectional study of 1671 children, stigma was an important factor associated with quality of life and was correlated with depression. Stigma scores differed based on level of severity and visibility.

Meaning

The findings of this study suggest that health care professionals should consider stigmatization and bullying in assessing the social and mental health of children and adolescents with chronic skin diseases.

Abstract

Importance

Chronic skin disorders in children frequently are visible and can cause stigmatization. However, the extent of stigmatization from chronic skin disease and association with mental health needs further study.

Objective

To examine the extent of stigma, dependence on disease visibility and severity, and association with mental health and quality of life (QOL) in chronic pediatric skin disease.

Design, Setting, and Participants

A cross-sectional, single-visit study was conducted at 32 pediatric dermatology centers in the US and Canada from November 14, 2018, to November 17, 2021. Participants included patients aged 8 to 17 years with chronic skin disease and 1 parent.

Main Outcomes and Measures

Using the Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Stigma-Skin, the extent of stigma with child-, caregiver-, and physician-assessed disease visibility (primary outcome) and severity was compared, as well as reduced QOL (assessed by Skindex-Teen), depression, anxiety, and poor peer relationships (PROMIS child and proxy tools) (secondary outcomes).

Results

The study included 1671 children (57.9% female; mean [SD] age, 13.7 [2.7] years). A total of 56.4% participants had self-reported high disease visibility and 50.5% had moderate disease severity. Stigma scores significantly differed by level of physician-assessed and child/proxy-assessed disease visibility and severity. Among children with chronic skin disorders, predominantly acne, atopic dermatitis, alopecia areata, and vitiligo, only 27.0% had T scores less than 40 (minimal or no stigma) and 43.8% had at least moderate stigma (T score ≥45) compared with children with a range of chronic diseases. Stigma scores correlated strongly with reduced QOL (Spearman ρ = 0.73), depression (ρ = 0.61), anxiety (ρ = 0.54), and poor peer relationships (ρ = −0.49). Overall, 29.4% of parents were aware of bullying of their child, which was strongly associated with stigma (Cohen d = −0.79, with children who were not bullied experiencing lower levels of stigma). Girls reported more stigma than boys (Cohen d = 0.26). Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety.

Conclusions and Relevance

The findings of this study suggest that physician assessment of disease severity and visibility is insufficient to evaluate the disease impact in the patient/caregiver. Identifying stigmatization, including bullying, and tracking improvement through medical and psychosocial interventions may be a key role for practitioners.

This cross-sectional study examines the stigmatization of children and adolescents associated with the visibility and severity of chronic skin disorders.

Introduction

Skin diseases affect more than a quarter of the population globally and are the fourth leading cause of nonfatal morbidity worldwide.¹ Since chronic skin disorders often begin during childhood, early life experiences can influence long-term health. Some chronic skin disorders (eg, acne and atopic dermatitis [AD])² are common, while genetic disorders (eg, congenital ichthyosis and epidermolysis bullosa [EB]) are rare. Chronic skin disorders are costly and can threaten physical, mental, and social health, impairing health-related quality of life (QOL) for the affected individual and family.

Stigmatization can disrupt psychosocial development in children with chronic disease.³ Stigmatization occurs when negative and often false ideas are attached to an individual, leading to altered personality development and acquisition of social attitudes and skills. Stigma can be experienced or perceived. Experienced (enacted) stigma refers to overt discriminatory behavior, such as avoidance from fear that lesions are contagious, leading to rejection and alienation. Perceived (internalized) stigma or self-stigma refers to an individual’s perception that negative attitudes about the condition could result in discriminatory behavior. Either form can strongly impact a child’s life. Anticipated stigma can impact family decision-making and cause patients and parents to avoid social situations. Stigma has been linked to anxiety and depression.³

Experienced and perceived stigma have been addressed in many chronic medical conditions (eg, HIV/AIDS, obesity, and mental illness), but have received limited attention in children across the range of chronic skin disorders.^4,5 To a large extent, the paucity of data on stigma stems from a dearth of validated instruments for studying stigma in children. A 2022 systematic review of assessment of stigma related to skin disease⁶ found only 1 pediatric tool, a subscale of the DISABKIDS Atopic Dermatitis Module.⁷ The generic Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Pediatric Stigma (PPS), a supplement for children with skin conditions (PROMIS Pediatric Stigma-Skin or PPS-Skin), and a new Proxy PPS-Skin measure for caregivers were recently developed to measure stigma in pediatric patients with chronic diseases.⁸ Using these tools, as well as a spectrum of other PROMIS tools to evaluate psychosocial health, we ascertained the extent of stigma in skin disorders, its association with severity and visibility, and its association with social and mental health of affected children and adolescents.

Methods

Study Population

Parent/child dyads were recruited at 32 sites in the US and Canada (eTable 1 in Supplement 1). All studies and survey content were approved by the site’s respective institutional review board and the Ann & Robert H. Lurie Children’s Hospital of Chicago and Northwestern University. Parent proxies gave written informed consent and children assented, consistent with local institutional review board policy. Participants received financial compensation. Inclusion criteria were children aged 8 to 17 years with chronic skin disease (present at least 6 months) and at least moderate severity and/or still visible when wearing clothes per physician assessment. All eligible children with a parent were invited to participate (unless the clinic was too busy to accommodate). Participants with disorders that precluded the ability to complete the questionnaires or could confound potentially stigmatizing diagnoses were excluded. Data on race and ethnicity were collected to ensure that the population is reflective of the general population of children. Recruitment took place between November 14, 2018, and November 17, 2021, with a pause at the peak of the COVID-19 pandemic when children were not physically in school. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.

Outcome Measures

This study involved a single in-person visit during which demographic information; medical history; assessment of disease severity and visibility by physician, child, and caregiver report; and measures of social and mental health were captured. A subgroup of caregivers and children with stable disease, confirmed by physician- and child-assessed severity, returned about 3 to 4 weeks after enrollment to assess test-retest reliability of the new PPS-Skin and Proxy PPS-Skin tools (Lurie Children’s Hospital of Chicago and Children’s Hospital of Philadelphia sites). Responses to questionnaires were provided either on paper forms or electronically using a REDCap database maintained at Northwestern University. Participants could complete questionnaires online within 72 hours if not completed at the visit.

The primary outcome was measuring childhood stigma in relation to disease visibility. Key secondary outcomes were comparing child-assessed stigma scores with disease severity; QOL, extent of anxiety, depression, and poor peer relationships; and parental responses, each of which was expected to correlate with stigma.

Physician, patient, and parent global assessments were performed for disease severity (mild, moderate, or severe) and visibility (mild [not visible when clothed], moderate [barely exposed when clothed], and severe [very visible]). To measure QOL, we chose Skindex-Teen and its subscales, each validated for patients aged 12 years or older.⁹ The 5-item subscale measures physical symptoms (PS: skin pain, burning/stinging, and itching; effect on sleep; and skin bleeding) and a 16-item psychosocial functioning subscale. Five children aged 8 to 10 years at Lurie Children’s Hospital found the questions easy to comprehend and answer in a pilot study.

Pediatric child-reported and proxy-reported PROMIS tools (short forms for anxiety, depressive symptoms, and peer relationships) are available.¹⁰ For these PROMIS measures, the reference population is the US pediatric general population, in which a T score of 50 is the mean of the general population. Scores greater than or equal to 60 (for depression and anxiety) or less than or equal to 40 (for peer relationships) are 1 SD from the mean and at least moderate.

The generic PPS⁸ was based on Neuro-QOL Pediatric Stigma,¹¹ originally developed for measuring stigma in children with chronic neurologic diseases. The PPS-Skin added 6 skin-specific items, cocalibrated to the PPS using a fixed calibration method.⁸ The additional skin-specific items capture the content of wishing the condition was not visible; feeling embarrassed when others asked; being unable to wear certain clothes or shoes; and noting that others avoided touching, not seeing the good things about the child, and thinking the child was not clean. Items are answered using a 5-point Likert scale and address the child’s perceptions, such as made fun of and treated unfairly, and emotions, such as embarrassment and worry. Among the 22 items surveyed in this study, 11 addressed perceived stigma and 11 addressed experienced stigma. The PPS, PPS-Skin, and 22 Proxy items (questions addressed as your child), corresponding to 22 child-reported items, were further calibrated in 689 dyads of parent and child aged 8 to 17 years with a diagnosis of cancer or various skin disorders (total 860 children, including those with neurologic conditions).⁸

As with all PROMIS tools, items were calibrated using grade response model and reported by using a T score scoring system, in which 50 is the mean of the reference group. However, given that the reference population is not the general population but rather children with chronic medical conditions that risk stigmatization, the standard cutoff for interpreting T scores as mild, moderate, and severe were adjusted for PPS/PPS-Skin based on calibration curves. T scores for stigma were assigned as 40 to less than 45 (mild), 45 to less than 55 (moderate), and greater than or equal to 55 (high). The 22 items from PPS-Skin were further validated in 179 children aged 8 to 17 years with AD and showed strong discriminant validity and responsiveness to change.¹² The PPS/PPS-Skin/Proxy tools are also available.¹⁰

Statistical Analysis

A sample size greater than or equal to 1500 allowed detection of a correlation of r = 0.1 with 95% spanning 0.1 or smaller. Descriptive analyses were performed using functions from the base, stats, and other packages in R, version 4.3.1 (R Foundation for Statistical Computing). Graphic analyses were done using ggplot2.¹³ Means (SD) are reported for scores. For analyses involving categorical variables, such as disease severity and visibility, numbers and percentages are reported, with Spearman ρ correlations used for associations between variables. Pearson correlations were used for associations between continuous variables. For the linear regression analysis, the lm function of the stats package of R was used. Comparisons with t tests used the default settings of R, which use Welch t tests not assuming equal variances in groups. Cohen d values¹⁴ were calculated using the effsize package of R. Test-retest analyses were conducted using the irrNA package of R. PROMIS measures were scored using the HealthMeasures Scoring Service.^15,16,17 Missing data were handled using a pairwise-present approach with all data (for correlations) or listwise deletion (for regression). Skindex-Teen was scored only if all items were present, and PROMIS scores were based on nonmissing responses. All tests were 2-sided, with α = .05.

Results

Participant Characteristics and Skin Disease Diagnosis

Overall, 1671 pediatric patients/caregivers were enrolled (>93% of those invited), with a mean (SD) age of 13.7 (2.7) years (Table). Patients were diverse in sex (967 [57.9%] female, 688 [41.2%] male), race (928 [56.4%] White) and ethnicity (347 [20.8%] Hispanic). Overall, 55.4% had private health insurance and 30.2% came from single-parent homes or had divorced or separated parents (eTable 2 in Supplement 1). All enrolled children/proxy completed the questionnaires with very few outcomes data missing (1.9% for child-reported visibility; 2.6% for child-reported severity; <1% for all other assessments, including 0.4% data for Skindex-Teen). Among demographic data, 1.1% of the participants did not report gender and 2.7% did not report race.

Table. Characteristics of the 1671 Children and Adolescents Surveyed^a.

Parameter	Mean (SD)
Parameter	All ages	Ages 8-12 y	Ages 13-17 y
Age, y	13.7 (2.7)	10.7 (1.4)	15.6 (1.4)
Gender, No. (%)
Male	688 (41.2)	269 (43)	419 (40.2)
Female	967 (57.9)	351 (56)	616 (59)
Not indicated	16 (1)	7 (1.1)	9 (0.9)
Child-reported visibility, No. (%)^b
Not visible when wearing clothing	208 (12.4)	93 (14.8)	115 (11.0)
Barely visible with clothing	488 (29.2)	205 (32.7)	283 (27.1)
Highly visible at all times	932 (56.4)	317 (50.6)	626 (60.0)
Child-reported severity, No. (%)^c
Mild	427 (25.6)	193 (30.8)	234 (22.4)
Moderate	844 (50.5)	275 (43.9)	569 (54.5)
Severe	356 (21.3)	132 (21.1)	224 (21.5)
Known bullying (of 1355 respondents), No. (%)	398 (29.4)	165 (32.1)	233 (27.7)
Skindex-Teeb score
Total (0-88)	24.0 (17.76)	19.5 (15.58)	26.7 (18.27)
Psychosocial function (0-68)	18.2 (14.36)	13.7 (12.07)	20.8 (14.94)
Physical symptoms (0-20)	5.9 (5.05)	5.8 (5.00)	5.9 (5.08)
Stigma (PPS-Skin) T score^d
Child-reported	43.8 (7.90)	42.5 (7.81)	44.5 (7.86)
Parent-reported	42.6 (9.36)	42.8 (9.52)	42.4 (9.26)
PROMIS depression T score
Child-reported	50.7 (10.04)	48.4 (9.19)	52.1 (10.27)
Parent-reported	52.1 (10.44)	51.0 (9.74)	52.8 (10.78)
PROMIS anxiety T score
Child-reported	50.2 (9.02)	49.2 (8.62)	50.9 (9.19)
Parent-reported	50.8 (9.81)	50.5 (9.47)	50.9 (10.01)
PROMIS peer relationships T score
Child-reported	51.8 (10.96)	53.4 (10.71)	50.9 (11.01)
Parent-reported	52.0 (11.48)	52.9 (11.04)	51.4 (11.71)

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Abbreviations: PPS, Pediatric Stigma; PROMIS, Patient-Reported Outcomes Measurement Instrumentation System.

^{^a}

eTable 2 in Supplement 1 provides additional demographic details.

^{^b}

Data missing on 32 (1.9%) children.

^{^c}

Data missing on 44 (2.6%) children.

^{^d}

In contrast to other PROMIS tools, PPS and PPS-Skin are calibrated to the population with chronic medical disorders. As such, T scores 40 to less than 45 represent mild stigma; 45 to less than 55, moderate stigma; and 55 or greater, high stigma.

Most common among the physician-determined diagnoses were acne (22.8%), AD/eczematous disorders (22.5%), alopecia (primarily alopecia areata) (11.3%), and psoriasis (7.4%) (eTable 3 in Supplement 1). Rare genetic disorders were also represented (eg, ichthyoses 2.1% and EB 1.0%). Overall, 56.4% of the children self-reported their condition as highly visible; 50.5% reported the severity as moderate, and 21.3% as severe. Skin disorders with the highest percentage of children reporting highly visible were acne (74.5%) and dermatomyositis/lupus (75%), while disorders with the highest self-reported severity were hyperhidrosis (55.6%), EB (33.3%), and AD (32.4%). Overall, 29.4% (n = 398) of parents were aware that the child had been bullied (Table), primarily at school (375 [94%]) and less often online (19 [5%]), at home (15 [4%]), or elsewhere in public (45 [12%], parks/camps/stores).

Chronic Skin Disorders Association With Stigma

Reliability of the PPS-Skin through test-retest was analyzed for 26 child and 30 proxy scores. Intraclass correlation coefficients were 0.76 (child) and 0.87 (proxy) (eFigure 1 in Supplement 1). Density plots of child-reported stigma for the total cross-sectional population and major disease groupings are shown in Figure 1. Only 27% of children with chronic skin disorders had a PPS-Skin T score less than 40, representing minimal or no stigma representing minimal or no stigma (ie, 73% had stigma). As shown in Figure 1, common disorders, such as acne, AD, psoriasis, and alopecia areata, had PPS-Skin scores that clustered close to the mean (SD) of the overall sample (43.8 [7.9]), on average in the mild stigma range (T scores 40-<45), but hyperhidrosis (47.9), ichthyosis (47.7), EB (47.3), and hidradenitis suppurativa (47.3) had higher mean stigma scores, in the moderate stigma range (T scores 45-<55) and 43.8% in the moderate range (T scores >45 to <55). Stigma T scores of other groups of disorders with fewer participant numbers are shown in Figure 2. Overall, 8.2% of total study participants had stigma scores in the high range (T score ≥55). However, more than 10% of children with certain disorders had high stigma (ichthyosis, 17.1%; EB, 12.5%; hyperhidrosis, 11.1%; and AD, 10.9%). Mean scores from the perceived stigma items (45.9) were higher than scores from the experienced stigma items (42.9). The highest discrepancies were seen for mean scores in hidradenitis suppurativa (53.7 vs 41.5) and hyperhidrosis (52.1 vs 45.8).

Figure 1. — Disorders with the greatest numbers of participants or highest mean T scores for stigma are included. T scores for the 22-item PROMIS PPS-Skin measure for each patient were determined and plotted. The mean values are all within the mild to moderate range of stigma for children with chronic diseases. Of the 1671 enrolled children, 1670 completed the full stigma questionnaire.

Figure 2. — T scores for the 22-item PROMIS PPS-Skin measure for each patient were determined and plotted. Disorders with the greatest numbers of participants or highest mean T scores for Stigma are included. The mean values are all within the mild (≥40) to moderate range of stigma for children with chronic diseases. Of the 1671 enrolled children, 1670 completed the full stigma questionnaire.

The mean PPS-Skin proxy T score was slightly lower than the mean child T score (42.6 vs 43.8). Proxy scores in the high range were lower than for children for acne, vitiligo, and vascular malformation, suggesting that parents may not recognize the potential impact of these disorders on the child. In contrast, proxy-rated high stigma was far above the child’s assessments for some disorders (eg, 22% vs 8.9% proxy vs child high T scores for psoriasis; 25% vs 12.5% for EB).

Girls experienced more stigma than boys (Cohen d = 0.26) (eTable 4 in Supplement 1). History of bullying, as reported by the parents, was strongly associated with worse scores for stigma (Cohen d = −0.79 for bullied vs not bullied), as well as with poor peer relationships (d = 0.54), depression (d = 0.48), and anxiety (d = 0.41) (eTable 4 in Supplement 1). Although the correlation of stigma and age was significantly different from 0, with slightly higher stigma scores associated with older age, the association was not substantive (ρ = 0.14). Other demographic variables did not affect stigma scores (eTable 4 in Supplement 1).

The SARS-CoV-2 pandemic disrupted in-person schooling and social interactions, thus becoming a potential confounder. As a result, enrollment was paused March 12 through August 10, 2020; as a post hoc analysis, we compared scores entered before the hiatus (n = 1020) and after the hiatus (n = 650), by which time more than 90% of the children had returned to in-person school. Differences in scores for stigma, depression, anxiety, and peer relationships were negligible based on Cohen d (eTable 4, eFigure 2 in Supplement 1).

Stigma Correlation With Disease Visibility and Severity

Child-reported PPS-Skin stigma scores were significantly different based on level of child-reported disease visibility (primary outcome) (Figure 3A) and severity (secondary outcome) (Figure 3B). However, correlations of child-reported stigma were small with visibility (ρ = 0.22) and severity (ρ = 0.29) (Figure 4). The child-reported visibility and parent-reported visibility scores were moderately correlated (ρ = 0.45) and better correlated than the child-reported visibility with physician-reported visibility scores (ρ = 0.34). Similarly, the child-reported severity and parent-reported severity scores were moderately correlated (ρ = 0.51) and better correlated than the child-reported severity with physician-reported severity scores (ρ = 0.15).

Figure 3. — A, Visibility was self-assessed as not visible (no; n = 208), barely covered by clothing (partial; n = 488), or very visible (high; n = 943). Comparison between not visible and barely covered, P < .001; comparison between barely covered and very visible, P < .001; and comparison across the 3 levels, P < .001. B, Severity was self-assessed as mild (n = 427), moderate (n = 844), or severe (n = 356). Comparison between mild and moderate, P < .001; comparison between moderate and severe, P < .001; and comparison across the 3 levels, P < .001. In these boxplots, the horizontal line is the median and the vertical lines are the IQR. PPS-Skin indicates PROMIS Pediatric Stigma-Skin.

Stigma Correlation With Depression

Stigma correlated strongly with overall QOL (ρ = 0.73) and psychosocial function (ρ = 0.76) (both P < .001) (Figure 4; eTable 5 in Supplement 1). Stigma scores also correlated strongly with child-reported scores for depression (ρ = 0.61) and moderately with anxiety (ρ = 0.54) and peer relationships (ρ = −0.49 negative indicating poorer peer relationships) (all P < .001) (Figure 4). Depression and anxiety were also strongly correlated with peer relationships. To clarify these correlations further, we conducted a mixed-model regression model using the Skindex-Teen Total score (0%-100% units) as outcome and child report of stigma, depression, anxiety, and peer relations as covariates. The analyses were carried out using the lme4 package of R.¹⁸ We also included physician-rated severity (mild [reference group], moderate, and severe, represented by 2 binary variables). Stigma was an important predictor of QOL (B = 1.05; 95% CI, 0.96-1.13). Smaller but significant regression coefficients were noted with depression (B = 0.43; 95% CI, 0.35-0.51) and anxiety (B = 0.21; 95% CI, 0.13-0.30), while the coefficient of peer relationship was trivial and nonsignificant (B = −0.01; 95% CI, −0.06 to 0.05). These tests were repeated for the Skindex-Teen Psychosocial Function and Skindex-Teen Physical Symptoms subscales, with similar results (eTables 6-8 in Supplement 1). Given the low rate of missing data, listwise deletion was used; residuals were visually inspected and did not reveal violations of assumptions, so the default estimator of restricted maximum likelihood was used.

For other PROMIS tools, referenced to the general population, at least moderate T scores (≥60) were noted in 14.3% of the participants for depression, 14.5% for anxiety, and 28.1% (T score ≤40) for peer relationships. Children with hyperhidrosis and hidradenitis suppurativa had the highest percentages of T scores 60 for depressive symptoms (hyperhidrosis, 40.9%; hidradenitis suppurativa, 44.4%) and anxiety (hyperhidrosis, 31.8%; hidradenitis suppurativa, 33.3%). Depression and anxiety were strongly correlated with stigma for most skin disorders, especially hidradenitis suppurativa (depression, r = 0.67; anxiety, r = 0.70; both P < .001), but were weakly correlated for hyperhidrosis (depression, r = 0.31; anxiety, r = 0.34).

Discussion

Skin disorders are often regarded as less serious than other groups of disease by the public, insurers, and pharmaceutical industry. However, a child or adolescent with a chronic skin disorder risks becoming the target for bullying, alienation, and feelings of reduced self-worth, leading to stigma. Using a large cross-sectional cohort of 1671 children from pediatric dermatology clinics across the US and Canada, we explored stigma associated with chronic pediatric skin disorders. Overall, stigma was experienced by 73% of children and adolescents with chronic skin disease and was at least moderate in severity in 43.8%, using a validated measure for children with chronic illnesses, including neurologic disorders¹¹ and cancer.⁸ Stigma was an important predictor of poor QOL among mental health domains and strongly correlated with childhood depression.

Stigma is a greater issue for children with higher disease visibility and severity. However, the relatively weak correlation of child-assessed disease visibility emphasizes that stigma can occur even in children whose diseases are not highly visible. Hidradenitis suppurativa, characterized by painful, draining lesions of the axillae, inguinal, and inframammary areas,¹⁹ areas entirely concealed by clothing, had a high extent of perceived stigma in children. Hidradenitis suppurativa has also been shown to cause considerable perceived stigma in affected adults.^20,21 Assessment of the relative role of perceived vs experienced stigma on a disease-specific basis relative to visibility and severity is ongoing.

Our data highlight that physicians who care for children with chronic skin disease should be aware of potential stigmatization. The 8-item PPS or PPS-Skin short form takes minutes to complete in a clinic or research visit to quantify and track stigma for its impact on QOL and propensity to improve the medical therapy. PROMIS tools are designed to be answered reliably by children aged 8 years or older based on cognitive testing, and our data further imply that children aged 8 to 17 years should be asked to self-report, rather than relying solely on proxy input. The only moderate correlation of child- vs proxy-reported stigma scores (r = 0.51; P < .001) and scores of other domains suggest that the PPS/Proxy PPS tools capture common variance, but are not redundant.

For those with at least moderate self-reported stigma (PPS-Skin score ≥45, moderate), interventions may be important. While successfully treating the underlying skin disease is a goal, other tools to diminish stigma include discussions with teachers; educating about the child’s disorder in the classroom; active discussions with the child about handling, recognizing, and managing bullying; and managing the psychosocial impact of stigma (eg, referral to psychiatry/psychology for interventions).^22,23,24 Several programs for youth experiencing other chronic diseases, particularly mental illness,^25,26,27 genetic disorders,²⁸ or HIV,²⁸ have been established to promote the development of resilience. Group sessions (and family sessions for younger children) can be geared toward (1) identifying and discussing coping strategies during stressful events, (2) strengthening social and familial relationships, and (3) establishing a healthy living environment through reducing stigma and improving disclosure skills.²⁹ Key strategies for tackling perceived stigma include becoming aware of self-stigmatizing thoughts and learning to change these feelings and behaviors.

Strengths and Limitations

To our knowledge, this skin disease–focused study is the first to use the recently validated PROMIS PPS; comparisons across chronic medical disorders will become available as investigators from other disciplines use the PPS generic tool to measure stigma. The study also has limitations. Although the cross-sectional nature and diversity of the study population were strengths, studies of stigma in children from middle-income and lower-income countries are also needed²² and the PPS-Skin instrument needs cross-cultural testing. Another limitation was lack of validated severity assessment tools shared across the wide variety of pediatric skin diseases in the analysis. As a result, we used a 4-point Likert scale for the child, parent, and physician to evaluate severity (with 0 being clear and ineligible) and a visibility scale linked to mild/invisible to the public, moderate/partly covered by clothes, and severe/easily visible. Investigators purposefully enrolled children who had physician-assessed moderate to severe disease severity and/or at least some visibility of skin disease while wearing clothing; thus, children with mild chronic disease that was not in a visible location were excluded. Skindex-Teen has been validated for children aged 12 years and older but has not been validated in children aged 8 to 11 years. The pandemic limited enrollment and required a temporary cessation. In addition, given the relatively low numbers of patients with disorders having the highest mean associated stigma T scores (hyperhidrosis, hidradenitis suppurativa, ichthyosis, and EB), future studies with larger patient numbers of these disorders are recommended.

Conclusions

The findings of this cross-sectional study suggest that stigma is central to the impact of chronic skin disease on QOL and mental health. Better treatment approaches for chronic skin diseases in children remain an unmet need. Increased awareness and instituting medical and psychological interventions to identify and reduce stigma and disease severity are important directions for improving QOL.

Supplement 1.

eTable 1. Study Sites

eTable 2. Additional Demographic Data

eTable 3. Physician-Diagnosed Skin Disorders

eTable 4. Effect of Variables on Stigma and Other Domains

eTable 5. 95% Confidence Intervals for Spearman Correlations in Figure 3

eTable 6. Mixed-Model Regression: Skindex-Teen Total

eTable 7. Mixed-Model Regression: Skindex-Teen Physical Symptoms

eTable 8. Mixed-Model Regression: Skindex-Teen Psychosocial Function

eFigure 1. Intraclass Correlation Coefficients (ICC) for Test-Retest of the PPS-Skin

eFigure 2. Self-Reported Stigma, Depression, Anxiety, and Peer Relationship Scores Were Unaffected by the Pandemic

jamadermatol-e240594-s001.pdf^{(655.1KB, pdf)}

Supplement 2.

Data Sharing Statement

jamadermatol-e240594-s002.pdf^{(16KB, pdf)}

References

1.Hay RJ, Johns NE, Williams HC, et al. The global burden of skin disease in 2010: an analysis of the prevalence and impact of skin conditions. J Invest Dermatol. 2014;134(6):1527-1534. doi: 10.1038/jid.2013.446 [DOI] [PubMed] [Google Scholar]
2.GBD 2019 Diseases and Injuries Collaborators . Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1204-1222. doi: 10.1016/S0140-6736(20)30925-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
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4.Wu JH, Cohen BA. The stigma of skin disease. Curr Opin Pediatr. 2019;31(4):509-514. doi: 10.1097/MOP.0000000000000792 [DOI] [PubMed] [Google Scholar]
5.Chamlin SL, Frieden IJ, Williams ML, Chren MM. Effects of atopic dermatitis on young American children and their families. Pediatrics. 2004;114(3):607-611. doi: 10.1542/peds.2004-0374 [DOI] [PubMed] [Google Scholar]
6.Luck-Sikorski C, Roßmann P, Topp J, Augustin M, Sommer R, Weinberger NA. Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient-reported outcome measures. J Eur Acad Dermatol Venereol. 2022;36(4):499-525. doi: 10.1111/jdv.17833 [DOI] [PubMed] [Google Scholar]
7.Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M; DISABKIDS group . The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes. 2005;3:70. doi: 10.1186/1477-7525-3-70 [DOI] [PMC free article] [PubMed] [Google Scholar]
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9.Smidt AC, Lai JS, Cella D, Patel S, Mancini AJ, Chamlin SL. Development and validation of Skindex-Teen, a quality-of-life instrument for adolescents with skin disease. Arch Dermatol. 2010;146(8):865-869. doi: 10.1001/archdermatol.2010.161 [DOI] [PubMed] [Google Scholar]
10.HealthMeasures . Accessed March 20, 2024. https://www.healthmeasures.net/search-view-measures
11.Lai JS, Nowinski C, Victorson D, et al. Quality-of-life measures in children with neurological conditions: pediatric Neuro-QOL. Neurorehabil Neural Repair. 2012;26(1):36-47. doi: 10.1177/1545968311412054 [DOI] [PMC free article] [PubMed] [Google Scholar]
12.Phan S, Rangel SM, Griffith J, et al. The burden of stigma in pediatric atopic dermatitis: measurement using the new, validated PROMIS Pediatric Stigma and Skin Module. Presented at the International Society of Atopic Dermatitis meeting; Montreal, Canada; October 17, 2022. [Google Scholar]
13.Wickham H. ggplot2: Elegant Graphics for Data Analysis. 2nd ed. Use R! Springer International Publishing; 2016. [Google Scholar]
14.Cohen J. Statistical Power Analysis for the Behavioral Sciences. Lawrence Erlbaum Associates; 1988. [Google Scholar]
15.Brueckl M, Heuer F. irrNA: Coefficients of interrater reliability–generalized for randomly incomplete datasets. R package version 0.2.3. 2022. Accessed September 3, 2023. https://CRAN.R-project.org/package=irrNA
16.Torchiano M. effsize: Efficient effect size computation. R package version 0.8.1. 2020. Accessed September 3, 2023.. https://CRAN.R-project.org/package=effsize
17.HealthMeasures . Accessed March 5, 2024. https://www.assessmentcenter.net/ac_scoringservice
18.Bates D, Maechler M, Bolker B, Walker S. Fitting linear mixed-effects models using lme4. J Stat Softw. 2015;67(1):1-48. doi: 10.18637/jss.v067.i01 [DOI] [Google Scholar]
19.Cotton CH, Chen SX, Hussain SH, Lara-Corrales I, Zaenglein AL. Hidradenitis suppurativa in pediatric patients. Pediatrics. 2023;151(5):e2022061049. doi: 10.1542/peds.2022-061049 [DOI] [PubMed] [Google Scholar]
20.Butt M, Chinchilli VM, Leslie DL, et al. Internalized skin bias: validation study to explore the impact of the internalization of social stigma on those with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2022;36(7):1118-1124. doi: 10.1111/jdv.18007 [DOI] [PMC free article] [PubMed] [Google Scholar]
21.Bilgic A, Fettahlıoglu Karaman B, Demirseren DD, et al. Internalized stigma in hidradenitis suppurativa: a multicenter cross-sectional study. Dermatology. 2023;239(3):445-453. doi: 10.1159/000529194 [DOI] [PubMed] [Google Scholar]
22.Hartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle-income countries: systematic review of intervention strategies. Soc Sci Med. 2020;246:112749. doi: 10.1016/j.socscimed.2019.112749 [DOI] [PMC free article] [PubMed] [Google Scholar]
23.Stephens MM, Cook-Fasano HT, Sibbaluca K. Childhood bullying: implications for physicians. Am Fam Physician. 2018;97(3):187-192. [PubMed] [Google Scholar]
24.Earnshaw VA, Reisner SL, Menino D, et al. Stigma-based bullying interventions: a systematic review. Dev Rev. 2018;48:178-200. doi: 10.1016/j.dr.2018.02.001 [DOI] [PMC free article] [PubMed] [Google Scholar]
25.Thornicroft G, Mehta N, Clement S, et al. Evidence for effective interventions to reduce mental-health–related stigma and discrimination. Lancet. 2016;387(10023):1123-1132. doi: 10.1016/S0140-6736(15)00298-6 [DOI] [PubMed] [Google Scholar]
26.Schachter HM, Girardi A, Ly M, et al. Effects of school-based interventions on mental health stigmatization: a systematic review. Child Adolesc Psychiatry Ment Health. 2008;2(1):18. doi: 10.1186/1753-2000-2-18 [DOI] [PMC free article] [PubMed] [Google Scholar]
27.Yamaguchi S, Wu SI, Biswas M, et al. Effects of short-term interventions to reduce mental health-related stigma in university or college students: a systematic review. J Nerv Ment Dis. 2013;201(6):490-503. doi: 10.1097/NMD.0b013e31829480df [DOI] [PubMed] [Google Scholar]
28.Konradi A. Stigma and psychological distress among pediatric participants in the FD/MAS Alliance Patient Registry. BMC Pediatr. 2021;21(1):173. doi: 10.1186/s12887-021-02647-7 [DOI] [PMC free article] [PubMed] [Google Scholar]
29.Dow DE, Mmbaga BT, Turner EL, et al. Building resilience: a mental health intervention for Tanzanian youth living with HIV. AIDS Care. 2018;30(sup4)(suppl 4):12-20. doi: 10.1080/09540121.2018.1527008 [DOI] [PMC free article] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplement 1.

eTable 1. Study Sites

eTable 2. Additional Demographic Data

eTable 3. Physician-Diagnosed Skin Disorders

eTable 4. Effect of Variables on Stigma and Other Domains

eTable 5. 95% Confidence Intervals for Spearman Correlations in Figure 3

eTable 6. Mixed-Model Regression: Skindex-Teen Total

eTable 7. Mixed-Model Regression: Skindex-Teen Physical Symptoms

eTable 8. Mixed-Model Regression: Skindex-Teen Psychosocial Function

eFigure 1. Intraclass Correlation Coefficients (ICC) for Test-Retest of the PPS-Skin

eFigure 2. Self-Reported Stigma, Depression, Anxiety, and Peer Relationship Scores Were Unaffected by the Pandemic

jamadermatol-e240594-s001.pdf^{(655.1KB, pdf)}

Supplement 2.

Data Sharing Statement

jamadermatol-e240594-s002.pdf^{(16KB, pdf)}

[doi240010r1] 1.Hay RJ, Johns NE, Williams HC, et al. The global burden of skin disease in 2010: an analysis of the prevalence and impact of skin conditions. J Invest Dermatol. 2014;134(6):1527-1534. doi: 10.1038/jid.2013.446 [DOI] [PubMed] [Google Scholar]

[doi240010r2] 2.GBD 2019 Diseases and Injuries Collaborators . Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1204-1222. doi: 10.1016/S0140-6736(20)30925-9 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r3] 3.Łakuta P, Marcinkiewicz K, Bergler-Czop B, Brzezińska-Wcisło L. The relationship between psoriasis and depression: a multiple mediation model. Body Image. 2016;19:126-132. doi: 10.1016/j.bodyim.2016.08.004 [DOI] [PubMed] [Google Scholar]

[doi240010r4] 4.Wu JH, Cohen BA. The stigma of skin disease. Curr Opin Pediatr. 2019;31(4):509-514. doi: 10.1097/MOP.0000000000000792 [DOI] [PubMed] [Google Scholar]

[doi240010r5] 5.Chamlin SL, Frieden IJ, Williams ML, Chren MM. Effects of atopic dermatitis on young American children and their families. Pediatrics. 2004;114(3):607-611. doi: 10.1542/peds.2004-0374 [DOI] [PubMed] [Google Scholar]

[doi240010r6] 6.Luck-Sikorski C, Roßmann P, Topp J, Augustin M, Sommer R, Weinberger NA. Assessment of stigma related to visible skin diseases: a systematic review and evaluation of patient-reported outcome measures. J Eur Acad Dermatol Venereol. 2022;36(4):499-525. doi: 10.1111/jdv.17833 [DOI] [PubMed] [Google Scholar]

[doi240010r7] 7.Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M; DISABKIDS group . The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes. 2005;3:70. doi: 10.1186/1477-7525-3-70 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r8] 8.Lai JS, Nowinski C, Rangel SM, et al. Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks. Qual Life Res. 2024;33(3):865-873. doi: 10.1007/s11136-023-03574-z [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r9] 9.Smidt AC, Lai JS, Cella D, Patel S, Mancini AJ, Chamlin SL. Development and validation of Skindex-Teen, a quality-of-life instrument for adolescents with skin disease. Arch Dermatol. 2010;146(8):865-869. doi: 10.1001/archdermatol.2010.161 [DOI] [PubMed] [Google Scholar]

[doi240010r10] 10.HealthMeasures . Accessed March 20, 2024. https://www.healthmeasures.net/search-view-measures

[doi240010r11] 11.Lai JS, Nowinski C, Victorson D, et al. Quality-of-life measures in children with neurological conditions: pediatric Neuro-QOL. Neurorehabil Neural Repair. 2012;26(1):36-47. doi: 10.1177/1545968311412054 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r12] 12.Phan S, Rangel SM, Griffith J, et al. The burden of stigma in pediatric atopic dermatitis: measurement using the new, validated PROMIS Pediatric Stigma and Skin Module. Presented at the International Society of Atopic Dermatitis meeting; Montreal, Canada; October 17, 2022. [Google Scholar]

[doi240010r13] 13.Wickham H. ggplot2: Elegant Graphics for Data Analysis. 2nd ed. Use R! Springer International Publishing; 2016. [Google Scholar]

[doi240010r14] 14.Cohen J. Statistical Power Analysis for the Behavioral Sciences. Lawrence Erlbaum Associates; 1988. [Google Scholar]

[doi240010r15] 15.Brueckl M, Heuer F. irrNA: Coefficients of interrater reliability–generalized for randomly incomplete datasets. R package version 0.2.3. 2022. Accessed September 3, 2023. https://CRAN.R-project.org/package=irrNA

[doi240010r16] 16.Torchiano M. effsize: Efficient effect size computation. R package version 0.8.1. 2020. Accessed September 3, 2023.. https://CRAN.R-project.org/package=effsize

[doi240010r17] 17.HealthMeasures . Accessed March 5, 2024. https://www.assessmentcenter.net/ac_scoringservice

[doi240010r18] 18.Bates D, Maechler M, Bolker B, Walker S. Fitting linear mixed-effects models using lme4. J Stat Softw. 2015;67(1):1-48. doi: 10.18637/jss.v067.i01 [DOI] [Google Scholar]

[doi240010r19] 19.Cotton CH, Chen SX, Hussain SH, Lara-Corrales I, Zaenglein AL. Hidradenitis suppurativa in pediatric patients. Pediatrics. 2023;151(5):e2022061049. doi: 10.1542/peds.2022-061049 [DOI] [PubMed] [Google Scholar]

[doi240010r20] 20.Butt M, Chinchilli VM, Leslie DL, et al. Internalized skin bias: validation study to explore the impact of the internalization of social stigma on those with hidradenitis suppurativa. J Eur Acad Dermatol Venereol. 2022;36(7):1118-1124. doi: 10.1111/jdv.18007 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r21] 21.Bilgic A, Fettahlıoglu Karaman B, Demirseren DD, et al. Internalized stigma in hidradenitis suppurativa: a multicenter cross-sectional study. Dermatology. 2023;239(3):445-453. doi: 10.1159/000529194 [DOI] [PubMed] [Google Scholar]

[doi240010r22] 22.Hartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle-income countries: systematic review of intervention strategies. Soc Sci Med. 2020;246:112749. doi: 10.1016/j.socscimed.2019.112749 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r23] 23.Stephens MM, Cook-Fasano HT, Sibbaluca K. Childhood bullying: implications for physicians. Am Fam Physician. 2018;97(3):187-192. [PubMed] [Google Scholar]

[doi240010r24] 24.Earnshaw VA, Reisner SL, Menino D, et al. Stigma-based bullying interventions: a systematic review. Dev Rev. 2018;48:178-200. doi: 10.1016/j.dr.2018.02.001 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r25] 25.Thornicroft G, Mehta N, Clement S, et al. Evidence for effective interventions to reduce mental-health–related stigma and discrimination. Lancet. 2016;387(10023):1123-1132. doi: 10.1016/S0140-6736(15)00298-6 [DOI] [PubMed] [Google Scholar]

[doi240010r26] 26.Schachter HM, Girardi A, Ly M, et al. Effects of school-based interventions on mental health stigmatization: a systematic review. Child Adolesc Psychiatry Ment Health. 2008;2(1):18. doi: 10.1186/1753-2000-2-18 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r27] 27.Yamaguchi S, Wu SI, Biswas M, et al. Effects of short-term interventions to reduce mental health-related stigma in university or college students: a systematic review. J Nerv Ment Dis. 2013;201(6):490-503. doi: 10.1097/NMD.0b013e31829480df [DOI] [PubMed] [Google Scholar]

[doi240010r28] 28.Konradi A. Stigma and psychological distress among pediatric participants in the FD/MAS Alliance Patient Registry. BMC Pediatr. 2021;21(1):173. doi: 10.1186/s12887-021-02647-7 [DOI] [PMC free article] [PubMed] [Google Scholar]

[doi240010r29] 29.Dow DE, Mmbaga BT, Turner EL, et al. Building resilience: a mental health intervention for Tanzanian youth living with HIV. AIDS Care. 2018;30(sup4)(suppl 4):12-20. doi: 10.1080/09540121.2018.1527008 [DOI] [PMC free article] [PubMed] [Google Scholar]

PERMALINK

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Amy S Paller, MD

Stephanie M Rangel, PhD

Sarah L Chamlin, MD

Aleena Hajek, MD

Sheshanna Phan, MD

Marcia Hogeling, MD

Leslie Castelo-Soccio, MD, PhD

Irene Lara-Corrales, MD

Lisa Arkin, MD

Leslie P Lawley, MD

Tracy Funk, MD

Fabiana Castro Porto Silva Lopes, MD

Richard J Antaya, MD

Michele L Ramien, MD

Karina L Vivar, MD

Joyce Teng, MD, PhD

Carrie C Coughlin, MD, MPHS

Wingfield Rehmus, MD

Deepti Gupta, MD

Lionel Bercovitch, MD

Sarah L Stein, MD

Christina Boull, MD

Wynnis L Tom, MD

Marilyn G Liang, MD

Raegan Hunt, MD, PhD

Minnelly Luu, MD

Kristen E Holland, MD

Jennifer J Schoch, MD

David Cella, PhD

Jin-Shei Lai, PhD

James W Griffith, PhD

Key Points

Question

Findings

Meaning

Abstract

Importance

Objective

Design, Setting, and Participants

Main Outcomes and Measures

Results

Conclusions and Relevance

Introduction

Methods

Study Population

Outcome Measures

Statistical Analysis

Results

Participant Characteristics and Skin Disease Diagnosis

Table. Characteristics of the 1671 Children and Adolescents Surveyeda.

Chronic Skin Disorders Association With Stigma

Figure 1. Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Pediatric Stigma (PPS-Skin) T Scores by Skin Disease Condition in 9 Skin Disorders With Greatest Number of Participants or Highest Scores.

Figure 2. Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Pediatric Stigma (PPS-Skin) T Scores by Skin Disease Condition in 7 Other Skin Disorders.

Stigma Correlation With Disease Visibility and Severity

Figure 3. Extent of Child Stigma Differentiates Levels of Visibility and Severity of Chronic Skin Diseases.

Figure 4. Spearman ρ Correlation Coefficients Across the Domains and Variables.

Stigma Correlation With Depression

Discussion

Strengths and Limitations

Conclusions

References

Associated Data

Supplementary Materials

ACTIONS

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Table. Characteristics of the 1671 Children and Adolescents Surveyed^a.