Systematic Review: Stigma Associated With Inflammatory Bowel Disease

Abstract

Background: Stigma, including perceived, enacted, and internalised forms, is associated with inflammatory bowel disease (IBD), affecting quality of life, delaying treatment, and impairing social interactions. Aim: To summarise existing data on stigma related to IBD. Methods: We searched MEDLINE, Embase and Scopus from inception to September 2025 for studies reporting the prevalence, assessment, predictors, and outcome of stigma in IBD. Results: We analysed 73 studies to explore stigma in IBD, its predictors and outcomes. There was significant heterogeneity in the methods of assessment of stigma due to the lack of standardised scales. Perceived stigma is common, with a prevalence rate of up to 85.6% in adults and 87% in children. Stigma manifests with concerns about being judged, body image issues, difficulties in relationships, and workplace discrimination. However, enacted and internal stigma are less frequently reported. Multiple predictors of stigma in IBD have been identified. Greater disease complexity and symptom frequency are associated with higher levels of perceived stigma. Low public awareness and knowledge of IBD contribute to increased stigma. These lead to psychological impacts such as anxiety and depression, social isolation and healthcare challenges, including reduced treatment adherence, ultimately reducing quality of life. Conclusion: This highlights the heterogeneity in stigma assessment methods and the need for more standardised research. It also emphasises the importance of addressing stigma through increased awareness, support and interventions aimed at enhancing resilience and coping skills.