The Researcher’s Summary:
Although there are many treatment options now available to treat juvenile idiopathic arthritis (JIA), we still do not know which treatments will achieve the best outcomes for individual patients. A formal research study, such as a clinical trial that compares different treatments in JIA, would be ideal, but such studies are often not feasible in JIA. A novel approach to evaluating the comparative effectiveness of these treatments is to collect data resulting from the use of standardized treatment plans in actual clinical practice rather than in a clinical trial.
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has made standardizing treatments for pediatric rheumatic diseases (such as JIA) a top priority, because by decreasing variability in the way patients are treated, we will be able to learn more about the effectiveness of the treatments and improve the quality of care that patients receive. In order for this approach to succeed, however, the treatment plans must be widely used by CARRA pediatric rheumatologists.
Four standardized treatment plans were developed for new onset systemic JIA (sJIA) by consensus, as part of a National Institutes of Health grant to CARRA. SJIA was chosen as the first JIA disease-type to study because it is a relatively uncommon, severe disease which often does not respond to traditional treatments. This has currently led to a great deal of variability in sJIA treatment by pediatric rheumatologists. Therefore, learning which treatments are the best is critically important for patients with this disease.
Developing a strategy that will allow widespread and easy use of the consensus treatment plans (CTP), including pilot testing of the plans and data collection process, is necessary before they can be widely disseminated. This proposal seeks to pilot the use of the CTPs to treat 30 sJIA patients in 15 CARRA Registry sites. Attention will be focused on developing ways to encourage and facilitate using the plans, including support for entering the data, general instruction on the plans, tools to help with physician decision making, and feedback about how each site is performing.
Once successful tools and ways to use the plans are developed, they will be shared, so that similar CARRA projects in other rheumatic diseases of childhood can also succeed. Lastly, this proposal will provide the necessary information that will support a larger scale grant to implement the CTPs across all CARRA Registry sites, which will then allow comparison of the effectiveness of the sJIA CTPs.