Abstract

Abstract INTRODUCTION Disease-related stigmatization is present in IBD, with a substantial proportion of patients reporting that they perceive discriminatory attitudes or behaviors from others because of their IBD status. These perceptions are associated with poor outcomes. However, stigma perceptions are not well studied in patients from underrepresented racial and ethnic minority (URM) groups. As such, we aim to assess stigma perceptions in URM IBD patients and their relationship to Health Related Quality of Life (HRQoL). METHODS Adult patients 18+ recruited via social media and researchmatch.org website completed an anonymous online survey: demographics, disease information, Harvey Bradshaw Index (HBI) or simple clinical colitis activity index (SCCAI) with >4 = active IBD, NIH-PROMIS QoL module (anxiety, depression, fatigue, sleep disturbance, pain interreference, social function), and the Perceived Stigma Scale for IBS (“IBS” replaced with “IBD”). Elevated stigma was identified via median split (Median=28). Independent samples t-Test, Pearson’s correlation, and hierarchical linear regression statistics were used. RESULTS 90 participants: 50% UC, 79% female, 66% South/Southeast Asian, 10% Hispanic, Age (Mean±SD))=34.8±9.8 years. 52% had active IBD (5.77±4.22) with “biologic” medications most used (38.9%). 59% reported high levels of perceived stigma (Mean IBD-PSS score: 30.57±16.3); no differences by IBD type, age, gender, race, or ethnicity. Patients with active IBD reported significantly more stigma experiences (36.0±2.7 vs. 23.3±10.9, p<.001). Stigma perception was significantly correlated with all HRQoL domains: anxiety r=0.414, depresison r=0.471, fatigue r=0.424, sleep disturbance r=0.293, pain interference r=0.474, social function r= -0.439 (all p<.01). When controlling for HBI/SCCAI, stigma was a larger predictor of anxiety (β=.365, p=.002), depression (β=.386, p<.001), social function (β= -.341, p=.003) than symptom severity, and smaller but significant predictor of fatigue (β=.254, p=.014) and pain interference (β=.290, p=.003). Stigma perceptions did not predict sleep disturbance (p=.087). CONCLUSION Approximately half of URM IBD patients reported high levels of stigma experiences. These perceptions were associated with negative outcomes across all HRQoL domains with the exception of sleep disturbance. Our results show stigma perceptions are an important consideration when evaluationg these outcomes in IBD, rather than disease activity alone. Further research on a larger scale and with more diverse population is needed in order to better understand the effects of disease stigmatization in URM IBD patients.

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