Internalized skin bias: validation study to explore the impact of the internalization of social stigma on those with hidradenitis suppurativa

Butt, Melissa; Chinchilli, Vernon M.; Leslie, Douglas L.; Khesroh, Eiman; Helm, Matthew; Flamm, Alexandra; Kirby, Joslyn S.; Rigby, Andrea

doi:10.1111/jdv.18007

Cited by 7 publications

(10 citation statements)

References 35 publications

(72 reference statements)

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“…These findings are in compliance with the published results on dermatological and mental diseases [8,9,16,23]. In the recent study by Butt et al [24], the Internalized Skin Bias Questionnaire (ISBQ) was shown to have a moderate correlation (0.63) with the experienced skin stigma questionnaire (QES-SF) as well as the BDI-II (0.66), and the psychosocial subscale of the Hidradenitis Suppurativa Quality of Life (HiSQOL) score (0.65) which had similar trends to our study. Thus, a new direction for the treatment could be implementing new strategies for improving internalized stigma of patients along with decreasing the disease activity to improve the quality of life and negative perception of patients' health status.…”

Section: Discussionsupporting

confidence: 93%

“…HSt-3 patients have higher ISS scores than other stages (p < 0.001). This was also partially demonstrated by Butt et al [24], by showing an increasing trend in mean ISBQ with increasing levels of self-reported disease severity of HSt-3. The majority of their patients self-identified themselves as having HSt-2 (54.24%), which was similar to our study population (52% of patients in HSt-2).…”

Section: Discussionsupporting

confidence: 59%

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Internalized Stigma in Hidradenitis Suppurativa: A Multicenter Cross-Sectional Study

Temel

Karaman

Demirseren³

et al. 2023

Dermatology

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Background: Hidradenitis suppurativa (HS) causes significant physical, social, and psychological burdens. Internalized stigma, acceptance of negative attitudes and stereotypes of society regarding a person’s illness, has not been studied previously in HS. Objectives: To investigate the internalized stigma state of HS patients and identify the factors affecting it. Methods: This multicenter, prospective, cross-sectional study included 731 patients. Internalized Stigma Scale (ISS), Hurley staging, Physician Global Assessment (PGA), Dermatology Life Quality Index (DLQI), Skindex-16, Beck Depression Inventory-II (BDI-II) and Visual Analog Scale (VAS)-pain score were used in the study. Results: The mean ISS value (57.50±16.90) was comparable to the mean ISS values of studies in visible dermatological and various psychiatric diseases. A significant correlation was found between the mean values of ISS and all disease activity scores, quality of life measures, BDI-II, and VAS-pain scores. Obesity, family history, low education and income level, vulva/scrotum involvement and being actively treated are significant and independent predictive factors for high internalized stigma in multivariate analysis. Conclusions: HS patients internalize society's negative judgements, which may create a profound negative effect on access to health care. Therefore, in addition to suppressing disease activity, addressing internalized stigma is fundamental for improving health care quality.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionsupporting

confidence: 59%

Internalized Stigma in Hidradenitis Suppurativa: A Multicenter Cross-Sectional Study

Temel

Karaman

Demirseren³

et al. 2023

Dermatology

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“…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.…”

Section: Discussionmentioning

confidence: 99%

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Paller,

Rangel,

Chamlin

et al. 2024

JAMA Dermatol

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ImportanceChronic 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.ObjectiveTo 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 ParticipantsA 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 MeasuresUsing 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).ResultsThe 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 RelevanceThe 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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“…Four instruments were used in this analysis: (1) the Internalized Skin Bias Questionnaire (ISBQ), (2) the Hidradenitis Suppurativa Quality of Life (HiSQOL) instrument, (3) the Beck Depression Inventory−II (BDI−II), and the Burns Anxiety Inventory (BAI) . The ISBQ was adapted from a previously validated instrument that measures internalized weight bias using a 7-point Likert scale (strongly disagree to strongly agree); total score range was 0 to 54 points. The HiSQOL is a previously validated HRQOL measure that was specifically designed for patients with HS.…”

Section: Methodsmentioning

confidence: 99%

Associations of Internalized Skin Bias With Age, Adverse Psychopathology, and Health-Related Quality of Life Among Patients With Hidradenitis Suppurativa

et al. 2022

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IMPORTANCE Hidradenitis suppurativa (HS) is a chronic autoinflammatory disease that is highly associated with affective disorders such as depression and anxiety. Recent studies have shown that patients with HS may also endorse high levels of internalized skin bias (ISB). This redirection of skin disease−related social stigma toward oneself may also play an important role in the associations between adverse psychopathology (eg, depression, anxiety) and health-related quality of life (HRQOL).OBJECTIVES To evaluate the associations of ISB with other core outcomes in HS and to determine if ISB may mediate the associations between adverse psychopathological outcomes and impaired HRQOL. DESIGN, SETTING, AND PARTICIPANTSA cross-sectional study of adult patients with HS recruited from 1 academic medical center as well as through virtual social and recruitment networks. Eligible participants completed an online survey comprised of 4 survey instruments along with demographic and disease history information from April 1, 2021, to July 15, 2021. MAIN OUTCOMES AND MEASURESMeasures included the Internalized Skin Bias Questionnaire (ISBQ), Burns Anxiety Inventory, the Beck Depression Inventory−II, the Hidradenitis Suppurativa Quality of Life (HiSQOL) instrument, along with demographic and disease history information. The primary outcome was HRQOL as measured by the HiSQOL. Data were analyzed in July through August 2021. RESULTSThe survey was completed by 230 of 279 patients (82.4%; mean [SD] age, 39.2 [11.2] years; 209 [90.9%] identified as female, 203 [88.7%] as not Hispanic, 178 [77.7%] as White). Depression and anxiety were shown to be a substantial burden in this sample, with 56.5% of participants' scores qualifying for moderate or greater anxiety and 45.7% moderate or greater depression. The mean (SD) HRQOL scores were moderately high at 34.5 (16.7), indicating strong levels of impairment. There was a moderate correlation between ISBQ score and depression (r = 0.67); and fair correlations with HRQOL (r = 0.52) and anxiety (r = 0.56). Therefore, ISB appears to positively mediate the associations between depression and anxiety (estimated proportions of total effect that were mediated, 38.7% and 24.9%, respectively) and HRQOL. After controlling for age, disease severity, and disease duration, both ISB and anxiety were positive predictors of impaired HRQOL. CONCLUSIONS AND RELEVANCEThis cross-sectional study found that ISB was associated with adverse psychopathology and impaired HRQOL in patients with HS. Furthermore, ISB appears to mediate the associations of depression and anxiety with HRQOL. Future studies are needed to design interventions targeted at addressing adverse psychopathology associated with ISB and improving HRQOL and well-being for patients with HS.

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Internalized skin bias: validation study to explore the impact of the internalization of social stigma on those with hidradenitis suppurativa

Cited by 7 publications

References 35 publications

Internalized Stigma in Hidradenitis Suppurativa: A Multicenter Cross-Sectional Study

Internalized Stigma in Hidradenitis Suppurativa: A Multicenter Cross-Sectional Study

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Associations of Internalized Skin Bias With Age, Adverse Psychopathology, and Health-Related Quality of Life Among Patients With Hidradenitis Suppurativa

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