Rare Childhood Diseases: Understanding the Cost of Arthritis on Children and their Families.




Scientific study title:

Producing an Arthritis Value-framework with economic Evidence – Paving the Way for Rare Childhood Diseases



Principal Investigators:

Susanne Benseler, MD, PhD, Director, Alberta Children’s Hospital Research Institute, Pediatric Rheumatologist, Alberta Children’s Hospital
Professor of Pediatrics, Cumming School of Medicine, University of Calgary
Husky Energy Chair in Child and Maternal Health
Alberta Children’s Hospital Foundation Chair in Pediatric Research
Research Scientist, Arthritis Research Canada

Deborah A Marshall, PhD; Professor, Department of Community Health Sciences, Faculty of Medicine, University of Calgary; Scientific Director, Research and Partnership Evaluation and Impact, Alberta Children’s Hospital Research Institute



Tania Cellucci, Gillian Currie, Stacey Ann Page, Elizabeth Stringer, Joost Swart, Nico Wulffraat, Rae Yeung


Study Start Date:

January 2021

Study End Date:

December 2024


Why do this research?

Arthritis in children and teens is considered a very rare disease. Children with arthritis suffer from fatigue, joint pain, stiffness and swelling causing reduced mobility. This results in joint damage and life-long disability. The financial cost to the family includes: medication costs; modified home and school environment; and lost family income due to absences or ability to work at all. The social impact to the child is missed school days, limited ability to play with other children and the image that they are different. It is very difficult for children and other adults to understand that arthritis is a disease for all ages, not just ‘for old people’. The impact to the child is failed or lower education, a future of low paying jobs or unemployment due to disability, and for many poor mental health. For the parent as the prime caregiver and tutor, this can result in anxiety, depression and loneliness. In-fact, the whole family unit is impacted. The goal is to reduce inequalities, reduce the cost and improve the lives of children living with arthritis. Children with arthritis and their families need a voice.



What will be done?

The study will explore health-care system costs and impacts on families including financial, education, employment, productivity, well-being and quality of life. JIA PaCER patient research partners will co-design and conduct focus groups to shape the value framework and help identify potential interventions to reduce the burden of JIA. The patient partners on the team will be able to provide critical insights to what it is like to live with a chronic illness. They will bring their unique viewpoints based on their lived experience with JIA. The goal of the research project is to create a report reflecting their unique voices and patient experiences in transitioning from child to adult care for JIA.


Who is involved?

The ‘PAVE’ team is an international partnership of six countries (Canada, Germany, Belgium, Spain, Switzerland and Israel) including clinical leaders, researchers, social scientists and patient organizations. The researchers will work with with patient and family advocacy organizations including a partnership between the national Canadian patient organization Cassie and Friends, the European Network for Children with Arthritis (ENCA) and the Israeli Family Organizations.

We will also collaborate with six young adults living with juvenile idiopathic arthritis (JIA), who are recent graduates of the Patient and Community Engagement Research (PaCER) program through Continuing Education at the University of Calgary.


Funding Agency

Canadian Institutes of Health Research