Inflammatory bowel disease (IBD), including ulcerative colitis and Crohn’s disease, diagnosed in childhood puts these patients — particularly those with severe disease or complications like cancer — at a higher risk of death that persists into adulthood, researchers at the Karolinska Institutet in Sweden report.
Their study, “Increased Mortality of Patients with Childhood-onset Inflammatory Bowel Diseases, Compared With the General Population,” was published in Gastroenterology.
Clinical presentation of childhood-onset IBD is characterized by many of the same traits as adult-onset disease, but limited evidence suggests it is often more severe. Pediatric cases have also been linked to various types of cancer, but life expectancy studies are rare.
Researchers performed a population-based cohort study to estimate mortality risk for overall and cause-specific mortality in childhood-onset IBD patients, during childhood and adulthood.
Making use of the Swedish nationwide health registers between 1964 and 2014, investigators identified 9,442 individuals diagnosed with IBD before age 18, and 93,180 healthy subjects matched for sex, age, calendar year, and place of residence.
Mortality rates were then compared between both groups and among calendar periods, and mean age at end of follow-up was 30 years.
Results showed ulcerative colitis patients were four times more likely to die than those in the control group, while Crohn’s disease and unclassified IBD children had around a two-fold increase in risk of death.
“Among patients younger than 18 years, there were 27 deaths from IBD,” they reported, indicating an almost five-fold increase in risk of death in comparison to controls.
Although cancer was the most common cause of death, IBD itself contributed most in the relative increase in mortality.
“It should be remembered that we’re talking small differences in number of deaths,” Ola Olén, MD, PhD, the study’s first-author and a consultant and researcher at Karolinska Institutet’s Department of Medicine in Solna, said in a news release.
“Most young people with IBD do not die earlier than their peers, but a few individuals with a severe case of IBD and serious complications such as cancer greatly elevate the relative risk.”
Current treatment for IBD consists of salicylates, corticosteroids, immunosuppressants and immunomodulators, but their use can carry severe side effects, including cancer or infectious diseases. It remains to be understood how childhood-onset IBD affects life expectancy, and if mortality rate has fallen with the development of new therapies.
With this in mind, researchers looked at mortality rates throughout the entire follow-up period. “Among young adults with IBD, we found no evidence that [risk of] death decreased from 1964 through 2014,” they reported.
“IBD therapy has improved greatly since the 1960s,” Olén said. “For one thing, we often now use new types of immunomodulating drugs. However, we couldn’t see that mortality rates have gone down since their introduction.”
“Individuals who are diagnosed in childhood need to be monitored carefully,” Olén added. “Those who might especially benefit from being closely monitored to avoid fatal intestinal cancer are children with ulcerative colitis, who also have the chronic liver disease primary sclerosing cholangitis.”
Primary sclerosing cholangitis (PSC) is a rare progressive disorder that slowly damages the bile ducts — passages that carry bile from the liver to the gallbladder and small intestine, where it helps with the digestive process. In PSC, the bile ducts become blocked due to inflammation or abnormal formation of fibrous tissue (fibrosis), leading to bile accumulating within the liver and damaging liver cells in ways that could cause liver failure.
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