Mia Sisic

Development of a Quality-of-Life Measure for Hidradenitis Suppurativa

Background: Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure. Objective: The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards. Methods: Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing. Results: Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure. Conclusion: The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.

Hidradenitis Suppurativa, Intimate Partner Violence, and Sexual Assault

Background: Sexual assault and intimate partner violence have never been examined in individuals with hidradenitis suppurativa. The research is important, because prior studies show higher incidences of intimate partner violence and sexual assault in individuals with disabilities, and hidradenitis suppurativa meets criteria for a disability. Objectives: The objective of the study is to examine whether individuals with hidradenitis suppurativa are at significantly higher risk of intimate partner violence and sexual assault compared with individuals who have acne, a recognised disability. Methods: Participants who met criteria for hidradenitis suppurativa and acne were recruited from a mid-sized university and a dermatology clinic. Participants spoke English and were over the age of sexual consent. Group (hidradenitis suppurativa and acne) differences on intimate partner violence and sexual assault were analysed. Victimisation within the past 12 months was measured using the Checklist for Controlling Behaviours, a measure of intimate partner violence, as well as the Sexual Experiences Survey–Short Form Victim, a measure of sexual assault. Results: In total, 243 participants (n = 128 for hidradenitis suppurativa; n = 115 for acne) were surveyed. Individuals with hidradenitis suppurativa were significantly more likely to report being victimised by intimate partner violence. Conclusions: Intimate partner violence was more frequently observed in individuals with hidradenitis suppurativa. Health care providers should be aware of this issue when interacting with patients with hidradenitis suppurativa.

Preliminary Validation of the HS-QoL: A Quality-of-Life Measure for Hidradenitis Suppurativa:

Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with adverse physical and psychosocial impacts. The development of an HS quality-of-life measure, HS-QoL, has been recently described. Objective: This study was designed to validate the HS-QoL. Method: Fifty-five patients with HS from 4 dermatology clinics completed the 30-minute online survey. Item reduction, reliability (internal consistency), and correlation analysis (to assess convergent validity) were conducted. Results: The HS-QoL was reduced from 53 items to 44 items, resulting in a 7-subscale questionnaire. All subscales demonstrated excellent internal consistency, except for the support subscale, which had adequate internal consistency. All 7 HS-QoL subscales were related to other measures of QoL, life satisfaction, and mental health, which demonstrates convergent validity. Conclusion: The 44-item HS-QoL demonstrated strong preliminary evidence of reliability (internal consistency) and convergent validity.