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

Temel, Aslı Bilgiç; Karaman, Bilge Fettahlıoğlu; Demirseren, Düriye Deniz; Çinar, Levent; Kaçar, Nida; Ermertcan, Aylin Türel; Başkan, Emel Bülbül; Güven, Münevver; Yazıcı, Serkan; Akbulut, Tuğba Özkök; Uçmak, Derya; Ataseven, Arzu; Temiz, Selami Aykut; Engın, Burhan; Aktürk, Aysun Şikar; Sarıcaoğlu, Hayriye; Özden, Müge Güler; Özdemir, Hilal; MAMMADLI, Kifayet; Durmaz, Koray; Gülbaşaran, Fatmagül; Kılınç, Fadime; Özden, Hatice Kaya; Gönülal, Meli̇s; Balcı, Didem Didar; Cemil, Bengü Çevirgen; Solak, Sezgi Sarıkaya; Selçuk, Leyla Baykal; Yavuz, Göknur Özaydın; Yavuz, İbrahim Halil; Dönmez, Levent; Alpsoy, Erkan

doi:10.1159/000529194

Cited by 9 publications

(7 citation statements)

References 26 publications

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“…Hidradenitis suppurativa, characterized by painful, draining lesions of the axillae, inguinal, and inframammary areas, 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 . Assessment of the relative role of perceived vs experienced stigma on a disease-specific basis relative to visibility and severity is ongoing.…”

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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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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“…Jørgensen and colleagues 29 reported that the scores for each of the 10 question items in the DLQI increased significantly in line with Hurley Stages. Bilgiç and colleagues 30 investigated internalized stigma in a recent multicenter study from T ürkiye reported a mean DLQI score of 13.88 6 8.98 in 731 patients with HS. In the present study, the mean DLQI score was lower at 7.5 6 6.5.…”

Section: Discussionmentioning

confidence: 99%

Demographic and Clinical Features and Factors Affecting the Quality of Life of Patients With Hidradenitis Suppurativa: A Cross-sectional Study

Erol Mart,

Bostanci,

Caliskan Odabas

2024

Dermatol Surg

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BACKGROUND Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with well-known adverse effects on quality of life (QoL). Improving patients' QoL has become an important objective of treatment. OBJECTIVE The purpose of this study was to evaluate the demographic and clinical characteristics and factors affecting the QoL of patients with HS. MATERIALS AND METHODS One hundred seventy-six patients with HS aged between 18 and 65 years were included in the study. The patients' demographic and clinical characteristics, treatments, and comorbidities were recorded. The disease stage was determined based on the Hurley staging system. The Dermatology Life Quality Index (DLQI) was used to evaluate QoL. RESULTS Mean DLQI scores were significantly higher in patients with advanced Hurley stages, lesions in the gluteal region and legs, and with more than 2 affected areas (p < .001). Correlations between patient-reported treatment outcomes and clinical characteristics of the patients were assessed. Findings of this study indicate the existence of a potential “window of opportunity” for laser epilation and wide local surgical excision, similar to anti–tumor necrosis factor therapy. CONCLUSION Timely and appropriate treatment can only be provided for patients with HS by evaluating objective disease severity measures and subjective patient data in combination.

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“…Stigmatization may result in impaired body image perception 38 . Patients with HS internalize society's judgments, which could have a severe impact on their ability to access medical care 39 . In order to improve the quality of health care, it is crucial to address internalized stigma in addition to disease activity 39 .…”

Section: Discussionmentioning

confidence: 99%

“…Patients with HS internalize society's judgments, which could have a severe impact on their ability to access medical care 39 . In order to improve the quality of health care, it is crucial to address internalized stigma in addition to disease activity 39 . A psychodermatological approach enhances QoL, disease flare-ups, and long-term management of the condition 40 .…”

Section: Discussionmentioning

confidence: 99%

Cutaneous body image in patients with hidradenitis suppurativa: a hospital-based cross-sectional study

Koumaki

Rovithi

Apokidou

et al. 2023

Sci Rep

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Hidradenitis suppurativa (HS) has been linked with body image (BI) impairment and reduced quality of life (QoL). We sought to evaluate the associations between Cutaneous Body Image Scale (CBIS) and disease severity in HS patients.Between July 2020 and January 2022, a cross-sectional study was carried out including consecutive HS patients above the age of 16 who attended a Tertiary Referral Hospital in Greece. Disease Severity was graded with the Hurley stage, HS-Physician’s Global Assessment (HS-PGA) scale, and the Modified Sartorius scale (MSS). Patients completed at their first visit ten survey instruments including Patients’ Severity of disease, pain and pruritus scale, CBIS, Multidimensional Body-Self Relations Questionnaire (MBSRQ) including 5 subscales: Appearance Evaluation (AE), Appearance Orientation (AO), Body Areas Satisfaction Scale (BASS), Overweight Preoccupation (OWP), and Self Classified Weight (SCW) , Dermatology Quality of Life Index (DLQI), Skindex-16, EQ5D 5L, EQ- visual analogue scale (VAS), PHQ9, and GAD7. In total, 70 HS patients above 16 years old participated, mean [SD] age, 34.44 [11.64] years; 49/70 (70%) males and 21/70 (30%) females. Mean ± SD CBI, DLQI, Skindex-16 total, EQ-5D-5L, EQ VAS, PHQ9 and GAD7 were 5.59 ± 1.58, 11.70 ± 8.88, 52.90 ± 27.75, 0.75 ± 0.21, 62.48 ± 21.12, 7.64 ± 5.56, 7.87 ± 5.23 respectively. Moderate to severe CBI dissatisfaction was reported by 36/70 (51.42%) patients. CBI was correlated with appearance evaluation (AE) (p < 0.01, r = 0.544), body areas satisfaction (BASS) (p < 0.01, r = 0.481), and overweight preoccupation subscale (OWPS) (p < 0.01, r = − 0.267), and Skindex-16 (p < 0.01, r = − 0.288). HS patients with affected genital areas scored higher in disease patient’s severity score (p = 0.015), and male patients scored higher in Skindex-16 than females(p < 0.01). Our study found that the mean of CBI in HS patients was 5.59 ± SD 1.58. Predictors for CBI dissatisfaction were low scores of MBSRQ Appearance Evaluation (AE) and Body Areas Satisfaction Subscale (BASS).

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

Cited by 9 publications

References 26 publications

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

Demographic and Clinical Features and Factors Affecting the Quality of Life of Patients With Hidradenitis Suppurativa: A Cross-sectional Study

Cutaneous body image in patients with hidradenitis suppurativa: a hospital-based cross-sectional study

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