Today’s #CRArthritis includes part one of a two-part series on juvenile idiopathic arthritis (JIA).
Arthritis is not just a disease of aging—it also affects over 24,000 children and youth in Canada, making it the most common cause of chronic disability in children. Juvenile idiopathic arthritis can cause chronic pain, joint damage, and disability, impacting physical development, education, and overall quality of life. In recognition of Juvenile Arthritis Awareness Month in Canada, ACE has prepared a special two-part #CRArthritis series on JIA, featuring advances in advanced therapies, patient/clinician partnership and improving the patient and family experiences in JIA care.
Cost of juvenile arthritis to patients and families – Dr. Deborah Marshall
Dr. Deborah Marshall, Professor at the Cumming School of Medicine in the Department of Community Health Sciences at the University of Calgary, shares some of the findings from the Ucan Can-Du and Cure International prospective study that tracks the impacts of juvenile idiopathic arthritis (JIA) on employment, usual activities and out-of-pocket costs. Dr. Marshall is a health economist and health services researcher leading a programme of applied research using patient preferences, patient engagement and simulation modelling methods.
Development of national clinical guidelines for transition in rheumatology - Dr. Nadia Luca
Dr. Nadia Luca, Associate Professor at the University of Ottawa who practices as a Paediatric Rheumatologist at the Children’s Hospital of Eastern Ontario, discusses her presentation at the annual scientific meeting on the development of national clinical guidelines for transition in rheumatology in Canada. She offers valuable advice to helping children and youth living with JIA and their families understand the challenges of transitioning from pediatric to adult care and why standardized guidelines are so important.
How determinants of health inequities affect shared decision-making in juvenile idiopathic arthritis care - Dr. Karine Toupin-April
Dr. Karine Toupin-April, Associate Professor in the School of Rehabilitation Sciences at the University of Ottawa, discusses her presentation on how determinants of health inequities affect shared decision-making in juvenile idiopathic arthritis care. Her research explores how factors like gender, culture, and socioeconomic status affect decision-making in JIA care and why is it important to consider these determinants when making treatment decisions. Her review of research literature also found few studies directly link health inequities to decision-making in JIA care. She also shares the potential consequences of not addressing these inequities in treatment planning.
Patient and citizen engagement in arthritis research – Dr. Karen Beattie
Dr. Karen Beattie, Research Manager in Pediatric Rheumatology at McMaster University and the Lead for Patient and Family Engagement in Research for the Department of Pediatrics at McMaster University, talks about her unique roles and the importance of patient engagement in health research. Karen also shares an outcomes of an exciting project lead by Dr. Michelle Batthish and colleagues that addressed transitioning from pediatric to adult rheumatology care.