Sexual and gender minority inclusivity in hidradenitis suppurativa patient reported outcome measures

Summary: Abstract Body: Sexual and gender minority (SGM) patients with hidradenitis suppurativa (HS) may have elevated levels of anxiety, depression and suicidality due to HS disease. However, patient reported outcome measures (PROMs) used for HS research and clinical management may exclude or discriminate against SGM populations. To evaluate the inclusivity of SGM content within HS PROMs, we performed a thematic analysis of HS PROMs. Investigators with SGM health expertise amended an existing codebook based on National Institute of Health guides for SGM terminology. The codebook domains included (1) non-assumption of heteronormativity, (2) gender-neutral language, and (3) inclusion of other SGM spectrum topics. Thirty-one PROMs were included in the analysis: five focused on dermatology, five on HS, seven on mental health, and thirteen on general health. Three general health scales assumed heteronormativity (BoQoLI, FSFI-6, IIEF-5) and included phrases asking about “interactions with people of the other sex”. Three scales (Arizona Sexual Experience, PSQI, HSPE), including 1 HS-specific scale (HSPE), did not utilize gender-neutral language; an example question asked, “are you male or female?” Four scales (BI-QoLI, FSFI-6, IIEF-5, Arizona Sexual Experience), did not use language that was inclusive of other SGM spectrum topics. Within our study, all dermatology and most HS PROMs met criteria for inclusive language. Notably, there was a lack of inclusive language in PROMs concerning body image and sexual function. Modifying existing instruments to become more inclusive of diverse communities may be a viable option but will require investments of time and resources to ensure they maintain reliability and validity. Nonetheless, the inclusion of diverse patient populations must remain a priority in validating and creating PROMs. To optimize patient care, we must ensure PROMs used in research study methods and clinical management respect and affirm the diversity of the patients we serve. Justin L. Jia¹, Kennedy Sun², Leandra A. Barnes¹ 1. Dermatology, Stanford University School of Medicine, Stanford, CA, United States. 2. Dermatology, The George Washington University School of Medicine and Health Sciences, Washington, DC, United States. Minoritized Populations and Health Disparities Research