Abstract

Objective Individuals who identify as transgender or gender non-conforming (TGNC) number approximately 262 000 in England and Wales. However, they are under-represented in healthcare research and little is known about their experiences managing a chronic health condition and their unique needs. Inflammatory bowel disease (IBD) is a chronic inflammatory condition of the gastrointestinal tract which can lead to long-term complications such as surgery and colorectal cancer. Ensuring a positive patient experience is crucial to maintaining good adherence with medical therapy and compliance with regular invasive surveillance procedures to reduce the risks of these occurring. However, there is no data on the experiences of people who identify as TGNC and who suffer from IBD (TGNC-IBD) when engaging with IBD healthcare services. Our focus group aimed to provide qualitative data on the experiences of this population. Methods Following established qualitative research processes, and through work with Crohn’s and Colitis UK, we held a focus group with TGNC-IBD to gain, for the first time in the UK, patient-centred insight into their experiences engaging with IBD services and highlight areas that need improving. Results Common themes identified were healthcare professionals making assumptions regarding gender identity, poor mental health support, a lack of research into TGNC-IBD and poor facilities. Conclusion The findings underscore the need for improved training for healthcare providers and modification to IBD services as well as further research to address the unique needs of TGNC-IBD.