EXPERIENCES AND CHALLENGES OF LGBTQ+ INDIVIDUALS LIVING WITH INFLAMMATORY BOWEL DISEASE (IBD): INSIGHTS FROM FOCUS GROUPS OF A U.S. SAMPLE

Abstract BACKGROUND LGBTQ+ individuals face increased stigma, discrimination, and inequities, which are further compounded by challenges of living with IBD. This study aims to elicit concepts around IBD care experiences for the LGBTQ+ community, with the overall purpose of improving current and future clinical care, research practices, and community outreach. METHODS In summer of 2024, our tertiary IBD center conducted seven focus groups via video conferencing with participants from across the United States. We identified individuals with an IBD diagnosis and self-reported LGBTQ+ sexual orientation and gender identity (SOGI) from the electronic health record and invited them via email or phone to participate in video focus groups. All participants completed an online survey to confirm SOGI, IBD diagnosis, basic demographics, and IBD status. An experienced qualitative researcher moderated the discussions using a semi-structured focus group guide. The general topic flow covered participants’ IBD care experience, how they felt SOGI influenced their care, how IBD impacted social and romantic interactions, and their recommendations for involving the LGBTQ+ community in IBD research. Results were analyzed using a Framework approach, a general inductive method based in Grounded Theory. RESULTS We invited 850 eligible individuals, and 76 individuals responded. 48/76 participated and completed 1 of 7 focus groups. Most reported a lengthy history with IBD, with symptoms beginning in adolescence, often coinciding with delayed or misdiagnosis, ineffective treatment and confusion. IBD symptoms and ineffective treatment—coupled with struggling with SOGI or disclosing identity—compounded the stressors of each. Participants reported a wide range of IBD treatment approaches attempted, often with significant time before satisfactory symptom relief. They attributed this to insurance “cheapness,” lack of support or understanding of complementary therapies, significant femme discrimination, and invasive, aggressive, dismissive, incongruous and/or uninviting care. While they often reported challenges with their families of origin around both early IBD symptoms and SOGI, many found support in “chosen families”- romantic partnerships and social networks. They reported significant emotional labor and fatigue in explaining their conditions and identities to providers and others. They strongly feel health care providers need to openly seek and disseminate education and dialogue about IBD patient goals, identities, and trauma-informed care. CONCLUSION LGBTQ+ individuals living with IBD face unique challenges in managing their condition and navigating their identities, including delays in diagnosis, ineffective treatments, insurance limitations, and lack of supportive care. Future interventions should aim to address these challenges to improve IBD care for this population.