STIGMA INTERNALIZATION IN NON-WHITE PATIENTS WITH IBD AND ITS RELATIONSHIP WITH PATIENT OUTCOMES

Disease-related stigmatization is present in patients with IBD and includes internalization of discriminatory attitudes or behaviors. Prior studies show IBD-related stigma is associated with worse clinical outcomes. However, this has not been well-studied in underrepresented racial and ethnic minority populations (URM). The aim of the current study is to evaluate levels of internalized stigma in URM IBD patients and its relationship with the health-related quality of life (HRQoL) domains of anxiety, depression, fatigue, sleep disturbance, social functioning, and pain interference.

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 Internalized Stigma for Mental Illness scale (ISMI) (“mental illness” replaced with “IBD”). High internalized stigma on ISMI is weighted average > 2.50 on both the total score and each subscale (Alienation, Social Withdrawal, Discrimination, Stereotype Endorsement, Stigma Resistance). Independent samples t-Test, Pearson’s correlation, and hierarchical linear regression statistics were used.

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%). 27% reported high levels of internalized stigma: 54% reported alienation, 39% social withdrawal, 27% discrimination, 3% stereotype endorsement; 19% reported stigma resistance. No differences by age, IBD type, gender, race, or ethnicity. Patients with active IBD reported more internalized stigma (2.33±0.44 vs. 2.10±0.38, p=.008). Internalized stigma was significantly correlated with all patient outcomes: anxiety r=0.595, depression r=0.620, fatigue r=0.356, sleep disturbance r=0.328, pain interference r=0.421, and social function r= -0.566 (all p<.01). When controlling for HBI/SCCAI score, internalized stigma was a larger predictor of anxiety (β=.560, p<.001), depression (β=.567, p<.001), sleep disturbance (β=.272, p=.010), and social function (β= -.341, p=.003) than symptom severity, and smaller but significant predictor of fatigue (β=.255, p=.006) and pain interference (β=.308, p<.001).

Stigma internalization is prevalent in URM IBD patients, with alienation and social withdrawal most reported. Stigma was associated with negative outcomes, and is possibly a stronger predictor of HRQoL in IBD than the disease activity of IBD itself. Further research with larger cohorts and more diverse populations is needed in order to further elucidate the role of disease stigma in URM IBD patient experiences.