Increased Mortality of Patients With Childhood-Onset Inflammatory Bowel Diseases, Compared With the General Population

Gastroenterology. 2019 Feb;156(3):614-622. doi: 10.1053/j.gastro.2018.10.028. Epub 2018 Oct 17.


Background & aims: Childhood-onset inflammatory bowel disease (IBD) is believed to be a more severe disease than adult-onset IBD, but there is little information on all-cause and cause-specific mortality in patients with childhood-onset IBD. We performed a population-based cohort study, with 50 years of follow-up, to estimate absolute and relative risks for overall and cause-specific mortality in patients with childhood-onset IBD, during childhood and adulthood.

Methods: We identified children with a diagnosis of IBD (younger than 18 years) in the Swedish nationwide health registers (1964-2014; n = 9442) and individuals from the general population matched for sex, age, calendar year, and place of residence (reference group; n = 93,180). Hazard ratios (HR) for death were estimated using Cox regression separately in patients with ulcerative colitis (n = 4671), Crohn's disease (n = 3780), and IBD unclassified (n = 991). HRs were compared among calendar periods.

Results: During 138,690 person-years of follow-up, 294 deaths (2.1/1000 person-years) occurred among the patients with IBD compared with 940 deaths in the reference group (0.7/1000 person-years; adjusted HR, 3.2; 95% confidence interval [CI] 2.8-3.7). Mean age at end of follow-up was 30 years. HRs were increased for patients with ulcerative colitis 4.0, 95% CI 3.4-4.7; Crohn's disease 2.3, 95% CI 1.8-3.0; and IBD unclassified 2.0, 95% CI 1.2-3.4. Among patients younger than 18 years, there were 27 deaths from IBD 4.9, 95% CI 3.0-7.7. Among young adults with IBD, we found no evidence that HRs for death decreased from 1964 through 2014 (P = .90).

Conclusions: Children with IBD have a 3-fold increase in risk of death when followed through adulthood. The relative risk for death has not decreased with development of new drugs for treatment of IBD.

Keywords: Life Expectancy; Life Span; Malignancy; Pediatric.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Age of Onset
  • Cause of Death*
  • Child
  • Cohort Studies
  • Colitis, Ulcerative / diagnosis
  • Colitis, Ulcerative / epidemiology
  • Colitis, Ulcerative / therapy
  • Crohn Disease / diagnosis
  • Crohn Disease / epidemiology
  • Crohn Disease / therapy
  • Female
  • Humans
  • Inflammatory Bowel Diseases / diagnosis*
  • Inflammatory Bowel Diseases / epidemiology*
  • Inflammatory Bowel Diseases / therapy
  • Kaplan-Meier Estimate
  • Male
  • Middle Aged
  • Mortality / trends*
  • Prognosis
  • Proportional Hazards Models
  • Risk Assessment
  • Severity of Illness Index
  • Sex Factors
  • Sweden