P1177 Perceptions of patients with Inflammatory Bowel Disease and first degree relatives on prediction and prevention of disease

Abstract

Abstract Background Significant advances have been made in understanding the preclinical stages of IBD, and in identifying risk factors and biomarkers to predict IBD onset. With the use of predictive testing to identify patients at risk of developing the disease, it would be possible to intervene and try to mitigate that risk. However, the feasibility of such strategy, would depend on whether individuals at risk of developing IBD would be willing to undergo predictive testing and preventive interventions. Methods A Redcap® electronic survey, available in five languages, was disseminated by clinicians and patient’s associations to patients with IBD, first-degree relatives (FDRs) of those with IBD, parents with IBD and healthy children at risk (based on family history), and healthy couples with multiple children including one with IBD. Participants were asked to express their concerns regarding their own or offspring’s risk of developing IBD and acceptable predictive testing and preventive interventions. Results 817 individuals (75% women, mean age of 41±12 years) living in 28 different countries participated. The majority were parents with IBD of healthy at-risk children (59%). Among individuals with IBD, 50% had Crohn's disease, 55% were on biologic treatment, 25% had undergone surgery, and 62% reported a significant impact on their quality of life. Overall 85% expressed willingness for predictive testing, favoring minimally-invasive methods. Half of participants would agree to cross-sectional imaging and 38% would accept a colonoscopy. The main benefits recognized with predictive testing were the possibility of starting preventive interventions to minimize the risk of developing IBD (74%) and obtaining an earlier diagnosis (63%). Anxiety from a positive result was a concern (57%). A total of 98% would accept preventive interventions. The most accepted were quitting smoking (64%), physical exercise (81%), dietary modification/supplementation (86%/71%) and probiotics (79%); with the optimal duration of the intervention to last up to one year (33%). Participants deemed a risk of minor adverse events up to 10% acceptable, with 33% tolerating a higher risk if disease risk was reduced by 75%. Half agreed that costs should be supported entirely or shared (39%) with the government. Conclusion In this international survey of patients with IBD or parents of children at-risk of developing IBD, minimally-invasive predictive testing would be well accepted as well as non-pharmacological and highly effective preventive interventions.