Registry-Assisted Dissemination of Mobile Pain Management for Youth With Arthritis

Juvenile Idiopathic Arthritis (JIA) is an incurable inflammatory disease that is among the top five most common chronic diseases of childhood. A critical gap in JIA treatment is pain management, which continues to be an unnecessary burden for many youth with the condition. Research indicates that children with JIA are most interested in outcomes such as their level of comfort, and their ability to participate normally at school, sports, or hobbies, and with friends and family. However, medications fail to completely treat the pain. Methods to better enable the dissemination of effective nonpharmacological pain management strategies to these youth in a way that overcomes access barriers would represent a high impact advance to quality care.

The research team developed a mobile health (mHealth) pain management application (app) for youth with JIA. The app was tested at pediatric rheumatology clinics that participate in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry.

The specific aim of the research was as follows:

• Develop and evaluate the feasibility of a method for broad dissemination of evidence-based pain management strategies to youth with JIA. 

Researchers iteratively developed the “iCanCope” app with end-user input. The application was designed to monitor patient-reported outcomes about pain, the impact of pain on activities, medication use, and use of other coping strategies; and provide real-time customizable reports to help understand patterns of pain. Using Fast Healthcare Interoperability Resources (FHIR) data format standards, an informatics solution was also built to transmit pain data recorded on the mobile app to the CARRA registry data warehouse for long-term monitoring of patient clinical outcomes. Due to delays in the technical development, researchers were unable to evaluate the iCanCope app throughout CARRA registry sites as intended.

Researchers successfully developed an individually tailored mobile pain management app for youth with JIA. They also created the technical infrastructure and related quality assurance necessary to facilitate large-scale deployment of an mHealth pain management application. However, further work is required to evaluate patient impact of the dissemination method designed during this project.