JMIR Publications

ABSTRACT

Background:

Young people living with Juvenile Idiopathic Arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mHealth technology it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies.

Objective:

This study aims to examine how a novel mHealth patient support system fosters partnership between young people living with JIA, their families, and care teams.

Methods:

Semi-structured interviews with young people (ages 5-15), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis.

Results:

We conducted semi-structured interviews with 15 young people, their parents, and 4 care team members. Content analysis brought to light the potential of an mHealth Patient Support System (mPSS) to support elucidative dialogue between families and care teams. We identified four main themes: 1) Isolation due to JIA challenges communication; 2) Normalizing illness through shared experience may improve adherence; 3) Partnership opens window into illness experiences; 4) Readiness to engage appears critical for clinic implementation.

Conclusions:

A human-centered PSS design that offers JIA patients the ability to track personally relevant illness concerns and needs shows potential to enhance communication, generate consensus-based treatment decisions, improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.