Patients’ attitudes to disease prevention in inflammatory bowel disease: a US-based survey

Abstract Background Recent advances in biomarkers have identified at-risk cohorts for inflammatory bowel disease (IBD), and potential interception strategies to prevent disease onset are in progress. We sought to understand patient and family members’ views on IBD prevention, as they are key stakeholders in future adoption of prevention recommendations. Methods A workgroup of patient advocacy organizations and researchers adapted a survey for completion by the IBD community residing in the United States. All responses were anonymous. Descriptive results, and comparisons, were undertaken of pooled responses. Results One thousand five hundred forty-five respondents completed the survey. Most respondents (93%, n = 1,421) would be interested in taking a test to predict their or their family’s risk of developing IBD in the future. Almost all respondents were interested in taking preventative treatment to prevent IBD; 40% expressed an unconditional interest in the treatment, but 59% reported it would be dependent on the risks and effectiveness of the treatment. Lifestyle measures were the most preferred option to prevent IBD. There was no significant difference in proportion of patients who were willing to take a test or prevention treatment based on relationship to IBD (have IBD, first-degree relative of someone who has IBD, or parent of someone with IBD). Conclusions Most people affected by IBD in the United States agree with taking proactive measures to prevent IBD. A lifestyle intervention (diet, exercise) is favored over a pharmaceutical approach by these respondents. Relationship to IBD did not influence the magnitude of the agreement.