Linking Exercise, Activity, and Pathophysiology in Childhood Arthritis: A Canadian Collaborative Team
JIA (juvenile idiopathic arthritis) is one of the most common chronic diseases occurring in childhood, and can limit an affected child’s/teen’s ability to participate in normal physical activities, sport and play. Low levels of physical activity during growth and development can lead to poor muscle strength, which in turn can affect the ability of growing bones to become as strong as they need to be. The LEAP study is a multi-centre research program, involving 12 Canadian centres, which aims to uncover the factors that affect the ability of children/teens with JIA to participate in physical activities, and the barriers to such participation. We will also examine how varying levels of physical activity affect the inflammation of arthritis, as well as the developing bones and muscles, of children/teens with JIA. Through this research program, we hope to develop new evidence that will support the need for, and promotion of, increased levels of physical activity in children with JIA, with the ultimate objective of improving their overall health and well-being. Funding Source: The Canadian Institutes of Health Research (CIHR)UPDATE: A total of 707 families from across Canada have been enrolled into this study. Enrolment is now finished and many families are completing the 2-year follow-up study visits.For additional information, please contact the national study coordinator, Michele Gibbon or visit the project website. Jointly Managing JIA Online: An Internet-based Psycho-educational Game for Children with Juvenile Idiopathic Arthritis (JIA) and their ParentsThis objective of this study is to test a new online game for children with arthritis to see if it helps children and their parents better manage their arthritis. This study is taking place at 7 paediatric hospitals across Canada, with an expected total of 120 families taking part. Children, seen at these centres, who are 8-11 years old, and have been diagnosed with juvenile idiopathic arthritis (JIA) will be "randomized" into one of 2 study groups (along with their parents). The first study group will have access to the Internet educational game being tested, plus an educational website. The second group will continue with their normal care at CHEO and will only have access to the educational website. Comparing the 2 groups is the best way of knowing whether or not the Internet educational game affects a child’s ability to manage his/her JIA.Funding Source: The Canadian Institutes of Health Research (CIHR)UPDATE: Enrolment for this study began in the summer of 2016 and is ongoing.For additional information, please contact the local study coordinator, Michele Gibbon. Translating Research into Practice: Identifying Factors that Influence the Uptake of Canadian Research Findings into the Clinical Care of Children with ArthritisThe objective of this study is to gain a rich understanding of how children with JIA and their parents acquire new information on JIA, including the barriers they face when seeking this information, the information they feel is most important and useful to them, and their awareness and attitudes towards research. We hope that this will help us to get new research information about JIA to patients and their families, in a quick and easy way in the future. For this study, we have been conducting focus group interviews of: (1) teens with JIA and (2) parents of teens with JIA. Focus groups are often used in order to obtain detailed information on the perceptions, insights, attitudes, experiences, or beliefs from a group of people about a particular question or issue. The focus groups are being conducted at 4 Canadian centres.Funding Source: The Canadian Rheumatology Association, Canadian Initiative for Outcomes in Rheumatology cAre (CIORA) GrantUPDATE: Enrolment for this study has very recently been completed at CHEO. The data is now being analyzed. For additional information, please contact the local study coordinator, Michele Gibbon.
RACER (Readiness for Adult Care in Rheumatology)The goal of this study is to test the RACER (Readiness for Adult Care in Rheumatology) Questionnaire, which has been created to measure patient readiness to transition from paediatric to adult care. This study is taking place at 10 different paediatric and adult centres across Canada (including CHEO), with an expected total of 142 individuals who have a diagnosis of Juvenile Idiopathic Arthritis (JIA) and range in age from 16 to 20 years (at the time of enrolment) taking part. We hope that the RACER questionnaire will be used to assist youth in making a smoother transition from paediatric to adult care, by ensuring that they are ready and prepared. Evaluating transition readiness may lead to less adolescents becoming lost in the transition process and has the potential for positive long-term implications over their lifetimes, including the reduction of future pain and work-related disability and better health outcomes.Funding Source: Health Research Foundation (HRF)UPDATE: Enrolment for this study is nearly complete.For additional information , please contact the local study coordinator, Michele Gibbon.Pediatric Vasculitis Initiative (PedVas): Chronic Childhood Vasculitis: Characterizing the Individual Rare Diseases to Improve Patient OutcomesChildhood chronic vasculitis is a group of rare diseases that involve the inflammation of blood vessels in important body organs such as the kidneys, lungs and brain. It affects less than 1 in 100 of children/teens under the age of 17 years, annually. Most of what we know about chronic vasculitis in children is based on research involving people who have been diagnosed with vasculitis as adults. Unfortunately this knowledge has limited usefulness in helping children/teens with vasculitis since we don’t know if vasculitis and its treatment affects adults and children/teens in the same way. Doctors may only see one new child/teen with any vasculitis each year, so it is very difficult to learn more about the disease and improve the quality of care that we provide to patients and families dealing with this disease. Through this study, we hope to better understand the differences between adult Vasculitis and childhood Vasculitis in order to improve treatment for children/teens who are living with this disease. To do this, we are studying a large number of adult and paediatric patients with vasculitis, from centres across Canada, as well as other centres in North and South America, Africa, Europe and Asia. Our goal is to have a total of 600 children/teens with Vasculitis participate in this study.Funding Source: The Canadian Institutes of Health Research (CIHR)UPDATE: Enrolment for this study is ongoing. For additional information, please contact the local study coordinator, Michele Gibbon.
Developing a mobile app to help teenagers with arthritis and their parents make informed and personalized decisions about pain management optionsThe goal of this research is to develop and evaluate the impact of a mobile app that will give information on various pain management options as well as help families choose the options that reflect their values and preferences. First, the research team reviewed the available evidence on the pain management options for juvenile arthritis. This evidence was integrated into the app. Next, experts in pain and juvenile arthritis, teenagers with arthritis as well as parents participated in consensus meetings to refine the content of the app. The app is now being developed with the help of teenagers with arthritis, their parents and health providers. When the app is developed, we will evaluate whether it is acceptable to teenagers and their families, and whether it is feasible to evaluate through the conduct of a pilot study. Future steps will include a larger study to determine the impact of the tool, and a study to implement it in practice.Funding Source: The Arthritis SocietyUPDATE: Enrolment for this study began in the summer of 2017 and is ongoing.For additional information, please contact the principal investigator, Karine Toupin April, or the local study coordinator, Tania El Hindi.