UNCOVERING UNIQUE NEEDS AND BARRIERS TO CARE AMONG LGBTQ+ PATIENTS WITH IBD: INSIGHTS FROM A COMMUNITY SURVEY TO INFORM INCLUSIVE PRACTICES

Abstract

Abstract INTRODUCTION Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals face a myriad of disparities and unique challenges that impact their clinical care and outcomes, however, less is known regarding the specific needs of sexual and gender minorities with inflammatory bowel disease (IBD). Methods: The aim of this study was to better understand the unmet needs and potential barriers to care that LGBTQ+ persons with IBD experience. A survey was disseminated in March 2023 via email distribution by Girls with Guts and the AIDS Institute to individuals with IBD who identify as LGBTQ+. The data was analyzed with descriptive analysis with frequencies and percentages (%). Results: A total of 217 people completed the survey, including 165 cisgender, 34 transgender, and 18 gender nonbinary individuals with IBD. The majority of respondents identified as lesbian or gay (56%) or bisexual (27%), and most reported an IBD diagnosis of Crohn’s Disease (61%). Most indicated their IBD care team was aware of their gender identity (76%) and sexual orientation (75%), either through direct discussions or being asked on medical forms, however nearly half report that they sometimes to very frequently delay seeking IBD care (49%) or refrain from sharing information with their IBD care team (63%) because of worry or fear of mistreatment or judgement (Figure 1). Only 37% of individuals agreed their IBD care team meets their unique needs as an LGBTQ+ person, and respondents reported most commonly turning to online sources of health information (55%) and other members of the LGBTQ+ community (42%) rather than their IBD care team (26%) for information on IBD as it relates to their gender, sexual orientation, and/or sexual practices. Overall, respondents most frequently cited worry about judgement or mistreatment (40%) as a barrier to discussing sexual orientation and gender identify (SOGI) with their IBD care team, however, this concern was more frequently reported by transgender (65%) and gender nonbinary (72%) individuals than cisgender persons (33%) (Figure 2). Nearly half (46%) agreed the clinic where they receive their IBD care could be described as LGBTQ+ safe and inclusive, however, this percentage varied by location, with individuals living in small towns or rural areas expressing more disagreement. Overall, respondents identified their IBD care teams could most improve by becoming more knowledgeable in LGBTQ+ concerns related to IBD (46%), initiating conversations related to SOGI and sexual practices (30%), and displaying visible signs of LGBTQ+ acceptance (29%). CONCLUSION Collectively, these data provide insight into the unique challenges and needs of LGBTQ+ individuals with IBD and may be used to inform strategies that support equitable IBD care. Future studies should focus on the impact of such strategies on IBD-related outcomes.