When Dr. David Mack began work at CHEO in 2001, the hospital was treating 90 children and youth with inflammatory bowel disease. Just over 20 years later, that number has jumped to 400 young patients and it continues to grow.
Mack compares IBD to insulin-dependent diabetes. “Crohn’s disease and ulcerative colitis are also incurable and life-long conditions,” he said. “Medical treatments are used to both get them under control and to maintain control of the underlying disease condition.”
Canada has among the highest rates of IBD in the world for reasons that are not fully understood.
The report found that the number of people in Canada with IBD is increasing rapidly. There are currently 322,600 people, or 0.8 per cent of the population, up from 270,000 in 2018.
By 2035, the report predicts 470,000 Canadians will have been diagnosed with IBD, 1.1 per cent of the population.
One person in Canada is diagnosed every 48 minutes, according to the report.
Older Canadians, as a group, represent the fastest growth in cases of IBD in Canada as treatments improve and people live longer with the disease.
New diagnoses are rising the most rapidly in children under the age of six. Children tend to have more extensive disease and higher rates of acute severe colitis. They are also at risk for growth delay, puberty delay and bone development deficits.
Crucially, children diagnosed with IBD also have significantly higher rates of anxiety and depression, and treatment options are more limited than for adults.
Although there are growing numbers of treatments for IBD approved by Health Canada, most have not been tested on children and must be used off-label by pediatric IBD specialists.
In Ontario, some of those specialists, including CHEO’s Mack, are pressing the province to invest more money in treatment and care of children with IBD.
Increased mental health supports are needed for youth being diagnosed and treated for IBD, he added, as children have double the risk of mental health impacts, including anxiety and depression. “It is tough on the patients and their parents. We have to get appropriate resources.”
Dr. Eric Benchimol, the report’s co-chair and a professor of pediatrics and clinical epidemiology at the University of Toronto, said underfunding has meant many children diagnosed with IBD don’t have the mental health care they need.
“The value of having a mental health care provider involved in the care of these kids is massive. It is one of the things that has been lacking.”
He said the special needs of children and growing numbers of Canadians with IBD requires new approaches, including more interdisciplinary care for children and the addition of some virtual care for adult patients.
“We can’t keep doing what we are doing. The number of patients is overwhelming gastroenterologists.”
Canada has among the highest rates of IBD in the world and is only second to Norway when it comes to pediatric rates of diagnosis.
Treatment options continue to grow, but there is no cure and no prevention.
Many researchers are focused on looking at risk factors with a view to reducing cases.
“The reality is that the prevalence will continue to increase until we change peoples’ risk,” Benchimol said.
Although the exact cause of IBD remains unknown, genetics, the environment and microbiome are among risk factors.
The autoimmune diseases cause inflammation, ulcers and bleeding in the bowel that can extend to other parts of the body.
