Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome

Abstract

To compare the experiences of perceived stigma (PS) in both patients with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) and examine its relationship to patient-reported outcomes in both patient populations. IBD and IBS patients were recruited from an outpatient gastroenterology clinic and online via support message boards and classifieds. Participants completed a series of questionnaires to measure the perception of illness stigma, psychological functioning, and clinical and demographic data. Two hundred and sixty-nine IBS and 227 IBD patients participated. IBS patients were more likely to report high levels of perceived stigma across a wider range of sources, with the largest difference being for health care providers. Twenty-seven percent of IBS patients reported moderate to high levels of perceived stigma, compared with 8% of IBD. While perception of stigma was correlated with poorer patient-reported outcomes in both patient groups, correlations were larger for IBD compared with IBS. This study demonstrates that both IBD and IBS patients perceive stigma about their illness. As demonstrated by increased depression and anxiety, decreased self-esteem and self-efficacy, and lower quality of life in both patient groups, PS was shown to have a negative impact on clinical outcomes.