S0823 Disease Disclosure Preferences and Stigma Among Patients With Inflammatory Bowel Disease

Abstract

INTRODUCTION: Perceived stigma reflects people's perception of discrimination directed at them or others and is associated with poorer quality of life, medication compliance, self-esteem, and worsened depression. This study aims to 1) examine the habits and preferences of disease disclosure among those with IBD and 2) investigate the predictors of perceived and internalized disease disclosure stigma. METHODS: We administered a survey to 101 patients with an established diagnosis of IBD at Boston Medical Center, Boston, MA and at the Mayo Clinic, Jacksonville, FL. We assessed participant demographics, disease severity and duration, reasons for and against disease disclosure, and preferences for IBD resources at time of disease diagnosis. We also assessed participant disease disclosure stigma, work absenteeism, medication compliance using the MARS-5 scale, and anxiety using the GAD-7 scale. We used descriptive statistics to characterize participants and multivariate linear regression to assess predictors of perceived and internalized disease disclosure stigma. RESULTS: Participants were most comfortable disclosing their IBD status to parents and significant other, and least comfortable disclosing to colleagues, acquaintances and strangers (Figure 1). All participants agreed that various disclosure resources would be valuable to patients newly diagnosed with IBD. The most frequently cited resources include: information regarding the nature and disease course of IBD, Q&A sessions led by IBD specialists and patients, and information about online support groups. In multivariate analyses, prior "bad experience" with disease disclosure was associated with higher perceived disease disclosure stigma (P = 0.005). Higher education (college or post-graduate) was associated with lower internalized disease disclosure stigma. CONCLUSION: Navigating disease disclosure is an important aspect to managing an diagnosis of IBD. Our study highlights the importance of providing various disclosure resources to newly diagnosed patients who may struggle with their IBD. Moreover, our findings show that a prior "bad experience" with IBD disclosure negatively influenced patients' perceptions of stigma, further reinforcing the notion that patients with IBD may benefit from disclosure resources. Future research should build on our findings by empirically testing the impact of various disclosure resources on patient disclosure behavior and perception of disease-related stigma.Table 1Figure 1