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Inside Your IWK: Helping children and youth manage inflammatory bowel disease
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Dr. Tony Otley, a pediatric gastroenterologist at the IWK Health Centre, has spent the last 15 years studying inflammatory bowel disease, its impact on children and youth in particular, and ways to improve the quality of life for those affected by the illness. Dr. Otley follows about 300 children and teenagers with IBD.
The disease is very difficult for children and youth, which is why Dr. Otley is dedicated to helping them live healthier, more satisfying lives and with less pain. One of the ways he helps children and youth affected by the disease is through a special assessment tool that examines quality of life called the IMPACT Questionnaire.
“When we try a new medication or treatment, we need to determine how active the bowel disease is and whether, with treatment, there is an improvement. You need a tool to do that,” says Dr. Otley. “Aside from just looking at the inflammation and how active the disease is, we need to look at the impact of the condition on the individual patient.”The IMPACT Questionnaire was developed through research at the IWK Health Centre and the Hospital for Sick Children. The tool has been translated into 15 different languages and is in use in pediatric IBD clinical trials around the world.
Dr. Otley, along with colleague Dr. Patrick McGrath, Vice President, Research, at the IWK, has also developed an innovative, web-based, self-care program for teens with IBD called “The Mission is Remission.” The program was first developed in 2004 as a research project and included 12 online information sessions about IBD. These sessions covered several topics, such as relaxation, stress management and how to understand the different types of medications.
Now, with a generous donation from the IWK Auxiliary, Dr. Otley is preparing to launch a revamped version of the website. The enhanced online program will continue to help teens manage their condition and become more knowledgeable, but it will now also feature a built-in social media component. This component will help youth affected by IBD build a sense of community.
Peer support is critical in coping with a chronic disease like IBD. In addition to the website project, Dr. Otley’s team is also helping to connect teens who have IBD through a peer support group, held over an eight week period and in a comfortable environment. The group brings together both teens and physicians to chat. “Many of our patients don’t have someone to speak with who understands where they are coming from, so I view this as one more way that we can help them,” says Dr. Otley.
Of course, research is also important in advancing the care and quality of life of those with IBD. To that end, Dr. Otley is involved in a number of clinical trials. “In the division of gastroenterology at the IWK, we are very active in research,” says Dr. Otley. “There is a lot of research happening to try to figure out why someone goes on to develop Crohn’s disease or ulcerative colitis. I think in the past decade we have learned a lot about these conditions, but there is still much more we need to learn.”
Inside Your IWK is a joint project by the IWK Health Centre and IWK Foundation. To view some of the interview with Dr. Otley, please see the video below:
