Concerns and worries in people living with inflammatory bowel disease (IBD): A mixed methods study

Abstract Objective This mixed-methods study aimed to explore concerns and worries related to living with inflammatory bowel disease (IBD). Methods Overall, 294 patients with a clinically established diagnosis of IBD were enrolled in this cross-sectional study. Concerns and worries were measured with one open-ended question. Measures of anxiety and depressive symptoms and disease activity were also administered. A thematic analysis was conducted and thematic map created. Spearman’s rho was used to identify univariate correlations between predictors and the main themes. Binary logistic regression was used to test the predictors of the main themes. Results Despite the majority of study participants being in IBD remission (74%, n=217), all but 11 reported significant IBD-related concerns. Twenty two percent reported symptoms of depression and 41% of anxiety. Four themes were identified: Quality of life (51%); Unpredictability (35%); Symptoms (34%) and Treatments (19%). Males and older people were less concerned about Quality of life (OR=.597, 95% CI: .363–.980 and OR=.980, 95% CI: .965–.995, respectively). Those in remission were less concerned about Symptoms (OR=.510, 95% CI: .281- .926) while those with longer disease duration worried more about the Symptoms (OR=1.035, 95% CI: 1.010–1.061). Males were less concerned about Treatments (OR=.422, 95% CI: .229–.777). Conclusion IBD patients report significant disease-related concerns even when in remission. Further exploration of what predicts patient concerns may help in shaping health-care delivery so that it better addresses patient needs.