Did you know that The Arthritis Society cites paediatric rheumatology research at CHEO?
Yes, according to The Arthritis Society and the Canadian Arthritis Network, Canada is considered number one in the world for its paediatric rheumatology research. We are extremely proud of this accomplishment! CHEO contributes to this.
Please explain your area of research.
My area of research has been in juvenile idiopathic arthritis (JIA). My focus has been on outcome assessment in the JIA population and outcome measurement development. In the mid-90’s while in Montreal, I developed a quality of life measurement instrument used around the world today, which is called the JAQQ: Juvenile Arthritis Quality of Life Questionnaire. It includes four domains—physical functions, in two areas of gross motor function and fine motor function; a psycho-social functioning element, which looks at general functioning in relation to school, peers and overall well-being; and another area that looks at disease symptoms and treatments.
How is the JAQQ applied to research at CHEO?
A few years ago we embarked on a large national cohort study, which was run at 16 centres across Canada (including CHEO) called REACCH OUT. We wanted to look longitudinally at patients from commencement of the disease and follow them over time to see how they were doing and to see if we were able to identify factors present at the onset of the disease that might be predictive of longitudinal outcomes. In fact, we were able to show that the JAQQ is quite a useful, predictive tool of persistence of disease activity in certain sub-groups of patients.
What is the evolution of this research?
Right now, I am the principal investigator for a nationwide study involving 900 patients called LEAP: Linking Exercise, Activity and Pathophysiology in Childhood Arthritis: A Canadian Collaborative CIHR Team. This study allows us to look at the association between physical activity and disease activity and other outcomes such as physical function and quality of life. In addition, we’re looking at the effects on bone and muscle. Two-thirds of the patients in LEAP were also involved in REACCH OUT, which allows us the benefit of following those patients over many years.
What are you hoping to discover?
We believe that physical activity in general is a good thing; however, children with JIA exercise less and are less physically fit than other children. There is data associated with that and so we are trying to get a sense of what factors lead to that and to determine if physical activity would actually enhance or lead to better outcomes for children and youth with JIA.
Why is your research so important?
More than half of children with JIA go on to retain the disease into adulthood. So, there is probably somewhere in the order of 50,000 adults in Canada who’ve had arthritis as children. Arthritis is a disease that can occur in children and affects the whole spectrum. Based on our data and other data, it would seem that the earlier the disease is recognized, the better the outcome; so children with arthritis need to be recognized, diagnosed and treated early because they have a much better chance of getting a better outcome. I think this is critically important.
What is your impression of research at CHEO?
The vision of the CHEO Research Institute and my vision with regards to the way I think that the Department of Paediatrics should be moving forward are clearly aligned. CHEO has a culture of embracing research across the board; people understand its importance and are encouraged to participate.
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