Development and initial validation of a measure of perceived stigma in irritable bowel syndrome

Irritable bowel syndrome (IBS) is a poorly understood digestive disorder prone to stigmatization. We developed a measure of condition-specific perceived stigma to better understand the role of stigma in this common disorder. Questionnaire items were established through structured patient interviews. A 10-item measure assessing relevant stigma variables across social domains was then administered to 148 patients with IBS. Test-retest reliability was assessed by having a subset of 26 patients re-complete the measure after 2 weeks. Twenty-eight out of 49 (57%) interview subjects with some degree of perceived stigma related to their IBS. A 10-item measure was developed with the following areas of perceived stigmatization: limited disclosure of IBS; belief that public knowledge about IBS was low; feeling that IBS was not taken seriously; people implying that IBS symptoms are self-inflicted; role limitations because of IBS; and others having the belief that IBS is 'all in their head'. Respondents rated the 10 items on the new measure with respect to perceived stigma in the social domains of healthcare providers; spouses/significant others; family members; friends; boss/supervisor; and coworkers/classmates. Stigma scores were significantly correlated with scores from the modified HIV stigma instrument (r=0.56; p0.0001). Cronbach's was estimated at 0.91. Mean inter-item correlation was 0.50 and ranged from 0.29 to 0.71. Guttman's split-half reliability coefficient was estimated at 0.89. Test-retest reliability was high (r=0.91; p0.0001). Patients with IBS reported the greatest degrees of perceived stigma related to coworkers, employers, and friends. Stigma dimensions which received the highest scores focused upon limited knowledge of IBS by others along with a lack of interest or understanding of others towards the condition. The IBS perceived stigma scale is a reliable, valid measure of perceived stigma related to IBS.