Patient and First-Degree Relatives Perceptions About Prediction and Prevention of Inflammatory Bowel Disease-A Multinational Survey.

Background And Objective: While significant advances have been made in identifying biomarkers for predicting inflammatory bowel disease (IBD) onset, little is known about the willingness of at-risk individuals to undergo predictive testing and preventive interventions. This study aimed to assess acceptance of predictive tests and preventive interventions among individuals at risk of inflammatory bowel disease and identify factors influencing their decisions.

Methods: An anonymized electronic survey was distributed to parents of children at risk of inflammatory bowel disease and first-degree relatives (FDRs) of IBD patients via clinicians and patient associations. The survey assessed acceptance of predictive tests, preventive interventions, and influencing variables.

Results: A total of 1327 participants (74% women, mean age 42 ± 18 years) from 66 countries responded to the survey. Of these, 88% were parents of children at risk, and 12% were FDRs. Eighty-five percent were willing to embark in predictive testing, preferring blood analysis (91%), stool tests (89%), saliva tests (78%) or intestinal ultrasound (67%). Lower perceived IBD impact and higher disease knowledge reduced the odds of test acceptance. Preventive interventions were accepted by 98%, with dietary changes (85%), physical exercise (81%), and probiotics (71%) being the preferred. Acceptance of oral (38%) or intravenous/subcutaneous immunosuppressive treatments (32%) depended on their efficacy, difficulty, and risks.

Conclusion: Most respondents preferred minimally invasive predictive tests and non-pharmacological preventive measures, although more than one-third would be willing to undergo immunosuppressive medications to prevent disease onset. Disease knowledge and quality-of-life perceptions influenced preferences. This data provides important information for the development of IBD prediction and prevention strategies.