Impact of perceived stigma on inflammatory bowel disease patient outcomes

Background: Perceived stigma has been linked to disease outcome in several chronic illnesses. Stigmatization of illness often leads to increased psychological distress and poorer quality of life. While body stigma has been identified as a specific inflammatory bowel disease (IBD) patient concern, no study to date has systematically investigated the presence of stigma in IBD or its effects on disease course and management. Methods: Participants were recruited online and through the Illinois chapter of the Crohn's & Colitis Foundation of America. A screening measure was used to identify an established IBD diagnosis. Patients completed the Perceived Stigma Scale in IBS, Inflammatory Bowel Disease Questionnaire, Rosenberg Self-Esteem Scale, General Self-Efficacy Scale, the Brief Symptom Inventory, and the Rating Form of IBD Patient Concerns. Results: A total of 211 patients (156 CD, 55 UC) with a confirmed diagnosis for a minimum of 6 months completed the study. Eighty-four percent of participants reported perceived stigma. Hierarchical regression demonstrated that perceived stigma accounted for 10%-22% of the variance in health-related quality of life scores, 4%-16% for psychological distress, 5% for medication adherence, 19% for self-esteem, and 8% for self-efficacy. Effect sizes were small, but comparable with more traditionally evaluated patient variables. Conclusions: The majority of IBD patients report some perceived stigmatization. These results suggest that perceived stigma is a significant predictor of poorer outcomes in patients with IBD when controlling for illness and demographic variables. Perceived stigma is a potentially important psychosocial factor in IBD patient care and warrants further investigation.