Change in Prevalence of Family History During Long-term Follow-up of Pediatric-onset Inflammatory Bowel Disease Patients

Objectives: To prospectively study changes in prevalence of positive family history (FH+) in pediatric-onset inflammatory bowel disease (IBD) in contrast to previously published cross-sectional data. Methods: An observational cohort study was performed using a prospective pediatric-onset IBD database including 485 patients with disease duration ≥10yrs as of December 2016. Proband characteristics and FH+ were obtained at diagnosis and subsequently from the database, medical records and follow-up telephone interviews in 2006 and 2016. Results: Updated 2016 information was obtained from 322 (66%) patients and included in analysis with median follow-up of 18yrs (IQR 14, 26). Prevalence of FH+ increased from 13.7% at diagnosis to 26.6% at 20 years for first-degree relatives and from 38.5% to 52.2% for all relatives. At 20-year follow-up, an additional 10.0% of probands had a sibling, 6.1% had a parent, 1.9% had a grandparent, and 4.5% had a cousin diagnosed with IBD. FH+ at diagnosis was associated with greater risk for additional FH+ at 20 years (43% vs 22%, P 

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