Young people living with Juvenile Idiopathic Arthritis (JIA), the most common type of arthritis in children and teens, struggle to communicate their needs to their families and care teams. While it is important to support young people managing their own treatment and decision making, often they are ill-equipped to do this.
An international team led by a School of Public Health researcher examined how a mobile health (mHealth) app, which provides health services and information via portable devices such as a smartphone, influences conversations and partnerships between families, care teams and young people with JIA. Their findings were recently published in the journal JMIR mHealth and uHealth.
The app, called Genia, is an example of an mHealth patient support system and places an emphasis on encouraging communication and strengthening relationships in making treatment decisions. With Genia, users can track their objective measures such as pain, fatigue, exercise and diet as well as more subjective qualities including mood. The app is also designed to integrate these items into a pre-visit report that is sent directly to the care team. Researchers interviewed 15 young people between the ages of 5-15 as well as members of the care team to examine social and communications issues associated with JIA and their reactions to using Genia.
The study found:
- in general, young people who struggle with JIA often feel isolated and appreciate opportunities to engage with other children with the illness and be seen as a “normal kid;”
- young people embraced the opportunity to work with their parents to better explain and express their needs to their clinicians using details tracked with Genia, such as pain levels;
- use of Genia and other mHealth apps can support patients in adhering to treatment plans and aid clinics in implementing them;
- mHealth apps that meaningfully guide care providers to partner with patients, families and their support networks can lead to the development of inventive care plans through consensus-building strategies.
“mHealth and other technologies are challenging our conceptions of health communication and physician-patient interaction,” said Stuart Grande, lead researcher and lecturer in the School of Public Health. “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.”
Grande hopes to examine Genia use among broader audiences of families, patients and care teams.
“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,” said Grande.