Smart technologies influence on activity, medication adherence and pain for children and young people living with Juvenile Idiopathic Arthritis: STAMP out JIA study

Background: This ‘thesis by publication’ shares the journey of the development of a digital health intervention for children with Juvenile Idiopathic Arthritis (JIA). Objectives: To support development, three main objectives were considered: 1) to identify the current limitations in Paediatric Rheumatology, 2) understand essential design components, 3) preliminary test, in the clinical/home setting. Method: For objective 1, a critical review was conducted to place the thesis into context. Objective 2, two systematic reviews were completed to identify current interventions for JIA, evaluate their usability and effectiveness Objective 3, three clinical studies were conducted to evaluate: 1) challenges experienced during set-up, using document analysis. 2) feasibility of InteractiveClinics (new digital health technology specifically designed for this project), using a quantitative descriptive methodology. 3) usability, through a post intervention survey (quantitative and qualitative), analysed using descriptive statistics and thematic analysis. Results: Critical review - systemic problems were identified in paediatric rheumatology. Systematic reviews - three key health areas: symptom management, self-management development, and physical activity promotion; essential design components supporting adoption included: training, instruction manuals, goals set by users, ongoing technical support, personal reminders, ongoing human communication. Preliminary testing revealed: 1) barriers in Australia’s digital landscape hindering digital health. 2) demonstration of feasibility, by remotely recording real-time data from a smart watch and phone app on a web- based platform. 3) Children and their parents liking InteractiveClinics; and suggestive improvements: a more unique in-app experience. Conclusion: To ensure InteractiveClinics met the unique needs of Paediatric Rheumatology, evidence was gained from scholarly sources and intended users to identify the essential components needed to support JIA, a user-centred design, and engagement by children. Preliminary testing also demonstrated remote monitoring of children, on a web-based platform. Although this thesis concluded, improvements are still needed, this journey of developing a digital health intervention will add evidence to the digital health literature.