Mobile health technologies may help people with juvenile idiopathic arthritis (JIA) keep track of their health status and communicate with their physicians, improving their ability to make informed decisions about treatment, a study reports.
The study, “Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews,” was published in JMIR mHealth and uHealth.
Juvenile idiopathic arthritis (JIA) encompasses a group of chronic inflammatory conditions that affect the joints, causing swelling, stiffness, and pain in children and adolescents. Young patients with JIA face communication challenges to maintain their health while they move from pediatric care into adult care.
“Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies,” researchers stated.
Scientists from the University of Minnesota along with Swedish collaborators set out to evaluate the usefulness of an mHealth patient support system (mPSS) to promote communication among JIA patients, their families, and healthcare providers.
The study was based on semistructured interviews conducted with 15 JIA patients ages 5–15, their parents and four clinicians (one physiotherapist, one occupational therapist, and two physicians from the JIA clinic). Conventional content analysis was used to analyze transcribed data from the interviews.
Content analysis revealed that young JIA patients face multiple communication challenges, especially when they express pain or discomfort, or describe their symptoms to physicians. However, being able to talk about common experiences with their peers on social media seemed to ease their feelings of isolation and promote normalcy.
“The young people interviewed talked about the challenges of describing their pain and frustration with JIA, whether with physicians or friends. [M]ost … were reluctant to complain about pain or discomfort [and] many felt they were a burden on their parents,” researchers said. “The act of reaching out for connection may be a means of feeling normal or at least confirming that one is not alone.”
All study participants, including patients, parents and physicians, agreed that having a mobile tool to facilitate disease monitoring, such as the iOS-based mPSS Genia, and being prepared to relay that information to healthcare providers during clinic visits was important to ensure that patients were achieving the best possible clinical outcome.
“We heard from young people and their families that using a patient support tool to keep daily observations and reminders for routine updates was very helpful for developing strategies to communicate with providers,” scientists said.
“[Mobile apps used outside clinic visits may be useful] to improve pre-visit planning, to provide more time for dialogue with the patient during the visit, to help patients better understand what causes flare-ups and what therapy seems to work, and to provide a mechanism to track patients between visits,” one of the interviewed physicians said.
“This study is a step toward being able to identify how an mHealth app, co-designed with patients, families, and care teams, helps identify what matters most, as well as ways of translating patient goals into actionable solutions. We believe that offering patients the opportunity to engage friends, family, and their care team in developing treatment solutions may provide the emotional and clinical support they need to meet their personal health goals and sense of well-being,” the team said.