Direct and indirect impacts of discrimination, internalized stigma, and disease disclosure on IBD patient health outcomes

Abstract Background Internalized stigma impacts inflammatory bowel disease (IBD) patients’ wellbeing and has complex relationships with experiences of discrimination and disease disclosure. Methods We surveyed 1,263 IBD Partners e-cohort participants. Discrimination and internalized stigma were measured using the Everyday Discrimination Scale (EDS) and the Paradox of Self Stigma (PaSS-24) scale. IBD disclosure was measured using a modified “outness” scale. Results Overall, 48.8% of respondents reported discrimination, and there was a strong association between discrimination and internalized stigma (Pearson rho = 0.436, p < 0.001). Individuals who experienced discrimination were significantly more likely to be female, sexual or gender minorities (SGM), younger, and non-white. EDS score had a weak negative correlation with IBD disclosure (Pearson rho=-0.152, p < 0.001), indicating higher reported levels of discrimination correlated with lower rates of IBD disclosure. Internalized stigma was common and significantly associated with active disease (median PaSS-24 score 53 for respondents with active disease vs. a score of 43 for respondents in remission; p < 0.001). Internalized stigma had a moderate negative correlation with disclosure of IBD (Pearson rho=-0.397, p < 0.001), indicating that more disease disclosure correlated with lower levels of internalized stigma. In a mediation analysis, disease disclosure was a significant mediator of the effect of discrimination on internalized stigma, mediating 15% of the overall estimated effect (p < 0.001) Conclusions In this large cohort of adults with IBD, experiences of discrimination and internalized stigma were common and associated with active disease. Disease disclosure may mediate the relationship between discrimination and internalized stigma. This emphasizes the importance of psychosocial support for individuals with IBD.