Why this research matters
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in youth and can have a devastating impact on quality of life. Young people with JIA must manage unpredictable periods of debilitating pain, stigmatization and physical limitations. Pain is the most common and distressing symptom of JIA and can negatively affect all aspects of life, including physical, emotional, social and fulfilling of roles.
What is this research about?
Youth with JIA may continue to experience significant pain despite taking adequate doses of anti-inflammatory and disease-modifying medications. As they mature, they are expected to assume more responsibility for managing their symptoms, however, it can be challenging to adhere to their treatment plans. Improved self-management may lead to better health outcomes, including a reduction in pain, which can enhance quality of life.
Digital technologies may increase access to education, psychosocial and social supports for adolescents with JIA. Smartphones are an excellent tool to deliver self-management support due to their technical capabilities and strong integration into daily activities.
What did the researchers do?
Dr. Jennifer Stinson created an app to help youth with arthritis better manage their pain – a first of its kind. iCanCope is a smartphone-based pain self-management program that features symptom tracking, goal setting, a library of tools and strategies and social support.
What did they find?
Users of the iCanCope app had a reduction in the intensity of their pain. The app had high acceptability and the youth who used it had moderate-to-high adherence to a routine of daily symptom tracking.
What is the impact of this research?
iCanCope empowers youth with arthritis to keep track of their symptoms, set goals, access coping tools and interact with other young people living with pain. With further development, iCanCope could be used to not only help youth manage their pain but also improve other aspects of their health.
As a 17-year-old with Juvenile Idiopathic Arthritis, I have realized that pain management tools are vital in maintaining a good quality of life. The iCanCope app supported me with notification reminders, daily check-ins and goal setting to find an easy balance in monitoring my symptoms and developing a self-management plan. Research projects and studies like this are the basis of creating a huge positive impact on adolescents with persistent pain. "
— Natasha Trehan, Patient Partner Advisor and Research Participant
What comes next?
iCanCope has been paired with Apple’s ResearchKit platform. ResearchKit is designed to accelerate digital health research and expand access to research opportunities beyond clinics, to reach people in the community. A new iCanCope study is currently underway to test the feasibility of using ResearchKit to remotely recruit youth with JIA from the community. Led by Dr. Jennifer Stinson and Dr. Chitra Lalloo, this is the first study in the world to evaluate ResearchKit in a pediatric arthritis population. For more information about this study, contact firstname.lastname@example.org and mention “ResearchKit” in the subject field.
About the researcher
Dr. Jennifer Stinson is a nurse clinician-scientist in Child Health Evaluative Sciences, a nurse practitioner in the Chronic Pain Program at The Hospital for Sick Children (SickKids) and co-director of the SickKids Centre for Pain Management, Research and Education. Her research has been supported in part by an Arthritis Society Canada Strategic Operating Grant, awarded in 2014.
Lalloo C, Hundert A, Harris L, Feldman B, Spiegel L, Laxer R, Huber A, Houghton K, Tucker L, Cafazzo J, Pham Q, Schmeling H, Berard R, Stinson J. The iCanCope pain self-management application for adolescents with juvenile idiopathic arthritis: A pilot randomized controlled trial. Rheumatol. 2021;60(1):196-206.
Lalloo C, Pham Q, Cafazzo J, Stephenson E, Stinson J. A ResearchKit app to deliver paediatric electronic consent: Protocol of an observational study in adolescents with arthritis. Contemporary Clinical Trials Communications. 2020;17:100525.
Research at Arthritis Society Canada
Through the trust and support of our donors and partners, Arthritis Society Canada is Canada’s largest charitable funder of cutting-edge arthritis research, investing over $220 million in research projects since our founding. These projects have led to breakthroughs in the diagnosis, treatment and care of people with arthritis. Visit us at arthritis.ca/research.