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

Capone, Kristin*; Rosenberg, Harry J.*; Wroblewski, Kristen; Gokhale, Ranjana*; Kirschner, Barbara S.*

Journal of Pediatric Gastroenterology and Nutrition: June 2019 - Volume 68 - Issue 6 - p 829–834
doi: 10.1097/MPG.0000000000002253
Original Articles: Gastroenterology: Inflammatory Bowel Disease

Objectives: The aim of the study was 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 ≥10 years 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 18 years (interquartile range 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 < 0.001). Non-Jewish Caucasians had significantly lower risk of a FH+ compared to Jewish Caucasians (P = 0.002), but similar risk to African Americans (P = 0.55). FH+ at diagnosis was not associated with disease type (P = 0.33) or age at diagnosis (P = 0.24).

Conclusions: This prospective study documents changes in family history of IBD in pediatric-onset IBD patients over time. Prevalence of FH+ increased for first-degree and all relatives at 20 years by 12.9% and 13.7%, respectively. FH+ at diagnosis was associated with a 2-fold greater likelihood of subsequent FH+ at 20 years.

*Department of Pediatrics, Section of Gastroenterology, Hepatology, and Nutrition

Department of Public Health Sciences, University of Chicago Medicine, Chicago, IL.

Address correspondence and reprint requests to Kristin Capone, MD, Department of Pediatrics, Division of Pediatric Gastroenterology and Nutrition, Rutgers University Robert Wood Johnson Medical School, 89 French St, 2nd Floor, New Brunswick, NJ 08901 (e-mail:

Received 30 May, 2018

Accepted 6 December, 2018

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The authors report no conflicts of interest.

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,