Research Completed

Rheumatology Care for Children with Juvenile Idiopathic Arthritis in Manitoba: A Closer Look at Access and Follow-up

Scientific Study Title:

Testing of System-Level Performance Measures for Inflammatory Arthritis

Start Date:

2015

End Date:

2022

Research Category

Arthritis Care, Health Habits & Wellbeing

Why do this research?

Reason For Research

Juvenile Idiopathic Arthritis (JIA) is the most common form of inflammatory arthritis in children. It is important that children get diagnosis and treatment for juvenile idiopathic arthritis as early as possible. The Arthritis Alliance of Canada (AAC), an organization of over 36 Canadian arthritis stakeholder groups, developed ‘Models of Care for Inflammatory Arthritis’. The Models of Care highlight best practices for early diagnosis and treatment using a set of quality measures for inflammatory forms of arthritis. These measures can be used to test the success of care models. We did this study because we wanted to look at two of these quality measures that are specific to juvenile idiopathic arthritis care.

Methodology

Execution of Research

We used Manitoba’s provincial administrative health records to find children under 16 years who were diagnosed with juvenile idiopathic arthritis between 2005 and 2015. We then checked two measures:
1) The percentage of kids who saw a pediatric rheumatologist within the first year after their diagnosis, and
2) How many of these kids had at least one follow-up visit with the specialist every year.

We also looked at how many times there were long gaps between visits, gaps of more than 12 or 14 months.

Findings & Next Steps

Between 2008 and 2015, 194 children were diagnosed with juvenile idiopathic arthritis. Most of them were girls and the average age at diagnosis was about 9 years. Here is what we learned about their care:

• Between 51% and 81% saw a pediatric rheumatologist within the first year of their diagnosis. This shows there is room for improvement in getting kids to see a rheumatologist quickly.
• Between 58% and 78% had at least one visit per year with their rheumatologist after diagnosis. This shows that not all kids are being checked regularly.
• A significant number of kids had long gaps between their visits to a rheumatologist. Over half of the kids in the study had a gap longer than 12 months between their visits at least once. One-third of kids had this more than once. This suggests that regular follow-up care isn’t happening for many.

The study showed that in Manitoba not enough children with juvenile idiopathic arthritis are seeing a specialist soon enough after their diagnosis. It also showed that many aren’t having regular follow-up visits with rheumatologists. This level of access to specialized care is less than ideal and could delay diagnosis and treatment. This could affect the health and well-being of these young patients.

This study consists of 4 sub-projects dedicated to achieving our overall goals. Click below for more information about each sub-project:

Related Publications

Barber CEH, Lix LM, Lacaille D, Marshall DA, Kroeker K, Benseler S, Twilt M, Schmeling H, Barnabe C, Hazlewood GS, Bykerk V, Homik J, Thorne JC, Burt J, Mosher D, Katz S, Shiff, NJ. (2019). Testing population-based performance measures identifies gaps in juvenile idiopathic arthritis (JIA) care. BMC health services research, 19(1), 572. https://doi.org/10.1186/s12913-019-4379-4