Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

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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.

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Most cited references 23

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Steve Walker, Martin Mächler, Ben Bolker … (2022)

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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

Theo Vos, Stephen S Lim, Cristiana Abbafati … (2022)

Summary Background In an era of shifting global agendas and expanded emphasis on non-communicable diseases and injuries along with communicable diseases, sound evidence on trends by cause at the national level is essential. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) provides a systematic scientific assessment of published, publicly available, and contributed data on incidence, prevalence, and mortality for a mutually exclusive and collectively exhaustive list of diseases and injuries. Methods GBD estimates incidence, prevalence, mortality, years of life lost (YLLs), years lived with disability (YLDs), and disability-adjusted life-years (DALYs) due to 369 diseases and injuries, for two sexes, and for 204 countries and territories. Input data were extracted from censuses, household surveys, civil registration and vital statistics, disease registries, health service use, air pollution monitors, satellite imaging, disease notifications, and other sources. Cause-specific death rates and cause fractions were calculated using the Cause of Death Ensemble model and spatiotemporal Gaussian process regression. Cause-specific deaths were adjusted to match the total all-cause deaths calculated as part of the GBD population, fertility, and mortality estimates. Deaths were multiplied by standard life expectancy at each age to calculate YLLs. A Bayesian meta-regression modelling tool, DisMod-MR 2.1, was used to ensure consistency between incidence, prevalence, remission, excess mortality, and cause-specific mortality for most causes. Prevalence estimates were multiplied by disability weights for mutually exclusive sequelae of diseases and injuries to calculate YLDs. We considered results in the context of the Socio-demographic Index (SDI), a composite indicator of income per capita, years of schooling, and fertility rate in females younger than 25 years. Uncertainty intervals (UIs) were generated for every metric using the 25th and 975th ordered 1000 draw values of the posterior distribution. Findings Global health has steadily improved over the past 30 years as measured by age-standardised DALY rates. After taking into account population growth and ageing, the absolute number of DALYs has remained stable. Since 2010, the pace of decline in global age-standardised DALY rates has accelerated in age groups younger than 50 years compared with the 1990–2010 time period, with the greatest annualised rate of decline occurring in the 0–9-year age group. Six infectious diseases were among the top ten causes of DALYs in children younger than 10 years in 2019: lower respiratory infections (ranked second), diarrhoeal diseases (third), malaria (fifth), meningitis (sixth), whooping cough (ninth), and sexually transmitted infections (which, in this age group, is fully accounted for by congenital syphilis; ranked tenth). In adolescents aged 10–24 years, three injury causes were among the top causes of DALYs: road injuries (ranked first), self-harm (third), and interpersonal violence (fifth). Five of the causes that were in the top ten for ages 10–24 years were also in the top ten in the 25–49-year age group: road injuries (ranked first), HIV/AIDS (second), low back pain (fourth), headache disorders (fifth), and depressive disorders (sixth). In 2019, ischaemic heart disease and stroke were the top-ranked causes of DALYs in both the 50–74-year and 75-years-and-older age groups. Since 1990, there has been a marked shift towards a greater proportion of burden due to YLDs from non-communicable diseases and injuries. In 2019, there were 11 countries where non-communicable disease and injury YLDs constituted more than half of all disease burden. Decreases in age-standardised DALY rates have accelerated over the past decade in countries at the lower end of the SDI range, while improvements have started to stagnate or even reverse in countries with higher SDI. Interpretation As disability becomes an increasingly large component of disease burden and a larger component of health expenditure, greater research and development investment is needed to identify new, more effective intervention strategies. With a rapidly ageing global population, the demands on health services to deal with disabling outcomes, which increase with age, will require policy makers to anticipate these changes. The mix of universal and more geographically specific influences on health reinforces the need for regular reporting on population health in detail and by underlying cause to help decision makers to identify success stories of disease control to emulate, as well as opportunities to improve. Funding Bill & Melinda Gates Foundation.

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Evidence for effective interventions to reduce mental-health-related stigma and discrimination.

Graham Thornicroft, Nisha Mehta, Sarah Clement … (2016)

Stigma and discrimination in relation to mental illnesses have been described as having worse consequences than the conditions themselves. Most medical literature in this area of research has been descriptive and has focused on attitudes towards people with mental illness rather than on interventions to reduce stigma. In this narrative Review, we summarise what is known globally from published systematic reviews and primary data on effective interventions intended to reduce mental-illness-related stigma or discrimination. The main findings emerging from this narrative overview are that: (1) at the population level there is a fairly consistent pattern of short-term benefits for positive attitude change, and some lesser evidence for knowledge improvement; (2) for people with mental illness, some group-level anti-stigma inventions show promise and merit further assessment; (3) for specific target groups, such as students, social-contact-based interventions usually achieve short-term (but less clearly long-term) attitudinal improvements, and less often produce knowledge gains; (4) this is a heterogeneous field of study with few strong study designs with large sample sizes; (5) research from low-income and middle-income countries is conspicuous by its relative absence; (6) caution needs to be exercised in not overgeneralising lessons from one target group to another; (7) there is a clear need for studies with longer-term follow-up to assess whether initial gains are sustained or attenuated, and whether booster doses of the intervention are needed to maintain progress; (8) few studies in any part of the world have focused on either the service user's perspective of stigma and discrimination or on the behaviour domain of behavioural change, either by people with or without mental illness in the complex processes of stigmatisation. We found that social contact is the most effective type of intervention to improve stigma-related knowledge and attitudes in the short term. However, the evidence for longer-term benefit of such social contact to reduce stigma is weak. In view of the magnitude of challenges that result from mental health stigma and discrimination, a concerted effort is needed to fund methodologically strong research that will provide robust evidence to support decisions on investment in interventions to reduce stigma.

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Author and article information

Journal

Title: JAMA Dermatology

Abbreviated Title: JAMA Dermatol

Publisher: American Medical Association (AMA)

ISSN (Print): 2168-6068

Publication date (Electronic): April 24 2024

Affiliations

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

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

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

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

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

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

[7 ]Department of Dermatology, Emory University, Atlanta, Georgia

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

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

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

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

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

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

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

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

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

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

[18 ]Department of Dermatology, University of Minnesota, Minneapolis

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

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

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

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

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

[24 ]Department of Pediatric Dermatology, University of Florida, Gainesville

Article

DOI: 10.1001/jamadermatol.2024.0594

SO-VID: 9277cdb7-8a87-4e14-ae7c-8fcf5f1e8eec

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Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

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Abstract

Importance

Objective

Design, Setting, and Participants

Main Outcomes and Measures

Results

Conclusions and Relevance

Related collections

Pediatric Pulse: Advancing Neonatal and Child Health

Most cited references 23

Fitting Linear Mixed-Effects Models Usinglme4

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

Evidence for effective interventions to reduce mental-health-related stigma and discrimination.

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