The University of Minnesota is exploring how a health app called Genia could be used to better communicate the needs of children living with Juvenile Idiopathic Arthritis, the most common type of arthritis in children and teens.
An international team led by a University of Minnesota School of Public Health researcher examined how mobile health apps, including Genia, could influence conversations between families, care teams and young people with JIA.
Researchers found that while it is important to support young people managing their own treatment and decision making, they are often ill-equipped to do so.
The team developed Genia to fix this problem. Through Genia, users can track things like pain, fatigue, exercise and diet as well as mood. The app then integrates these items into a pre-visit report that is sent directly to the care team.
In a study funded by San Francisco-based Genetech Inc., researchers interviewed 15 young people between ages 5 and 15, as well as members of their care team, to examine how Genia could impact them. The research team found that, in general, people who struggle with JIA often feel isolated and appreciate opportunities to engage with other children with the illness.
Afflicted children also embraced the opportunity to work with their parents to better explain and express their needs and pain levels to doctors using Genia. The app also helped them adhere to treatment plans.
"Technologies like mHealth are challenging our conceptions of health communication and physician-patient interaction," said Stuart Grande, lead researcher and lecturer at the School of Public Health, in a release. "Young people rely on their parents when communicating with physicians. Therefore an app like Genia, which offers parents and young people a way to connect prior to meeting with a physician, appears to be very important."
While the initial study delivered promising results, Grande said more work needs to be done before Genia is made widely available to other JIA patients.
"Although Genia offers a social support feature, there is more work needed to examine how a Genia-based support network impacts patient care outcomes and experience," he explained.
