Evaluating Skin Bias Internalization in Patients with Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is a chronic auto-inflammatory skin disease that affects approximately 0.1-2% of individuals. The disease presents with papules, pustules, and nodules, and for those with more severe disease patients can also develop abscesses and tunnels. The lesions typically form in hair-bearing and/or intertriginous regions of the body. The lesions can cause a significant amount of pain and discomfort, have a malodorous discharge, and significantly impact the patient’s health-related quality of life (HRQOL). Over the past several years, researchers have begun to explore the associations between HS and adverse psychopathological outcomes, finding that patients with HS are at an increased risk for depression, anxiety, and impaired body image. Previous studies show that patients with HS are also impacted by social stigma associated with their skin disease. Over time, these experiences can influence the way in which patients feel about themselves, leading to internalized skin bias (ISB). ISB may also play a significant role in these associations between adverse psychopathology and HRQOL. The objectives of this research are to evaluate the validity and reliability of the Internalized Skin Bias Questionnaire (ISBQ) in an HS population, to determine the association of this instrument with markers of HS severity, and to assess the association between ISB, age, HRQOL, depression and anxiety.

Data for this study were collected through an online cross-sectional survey study. The survey was sent to adult patients with HS from March 2021 to May 2021 with a retest sent 72 hours after the main survey to assess retest reliability. Reliability for the ISBQ was evaluated using Cronbach’s alpha and the Concordance Correlation Coefficient (CCC). Construct validity was evaluated using Pearson Correlation Coefficients with similar measures. Missing data ranged from 0.00% to 8.70%.

Multiple imputations were utilized in order to account for missing data of main predictors and outcomes. Descriptive statistics were used to characterize the sample and instrument scores. Spearman correlation coefficients and linear regression models were used to evaluate univariable associations. A stepwise linear regression model was used to evaluate multivariable associations. Mediation models were built to determine is ISB mediated the pathway between adverse psychopathology and HRQOL.

Internal consistency for the ISBQ instrument was 0.91 with a CCC of 0.88. The ISBQ had moderate correlation (r = 0.70) with the experienced skin stigma questionnaire as well as the BDI-II (r = 0.68) and the psychosocial subscale of the HiSQOL (r = 0.65). ISBQ scores did not significantly differ across different stages of disease severity or duration; though disease severity was approaching significance (p=0.05). Depression and anxiety placed a significant burden on this sample with 59.54% qualifying for moderate anxiety or greater and 50.00% qualifying for moderate depression or greater. HRQOL scores were high indicating high levels of impairment. Internalized Skin Bias Questionnaire (ISBQ) scores had moderate correlations with HRQOL, depression and anxiety. Age was approaching significance as a protective variable. ISB significantly mediates the associations between adverse psychopathology and HRQOL with ISB mediating 32.62% of depression and 23.82% of anxiety.

This research shows that the ISBQ is a valid and reliable instrument that can be used to assess the psychosocial construct of ISB especially in a population of HS patients. ISB is significantly associated with adverse psychopathology and impaired HRQOL in patients with HS and significantly mediates the associations between adverse psychopathology and HRQOL. Future studies are needed to design interventions targeted at addressing these feelings and improving HRQOL and well being for patients with HS.