Transition In Chronic Illness From Paediatric To Adult Care Using The Transitionmate App

Abstract

Transition from paediatric to adult care is a challenging stage in the life span of young people with chronic physical illness. These individuals often require significant and ongoing support from health facilities and parents/carers to accomplish this healthcare journey. There have been several prospective clinical interventions including the use of mobile application technology to improve self-management in transition to adult care for adolescents and young adults (AYAs) with chronic illnesses. However, scarce evidence is available on long term engagement in successful transition care, even with increasing numbers of young people with chronic illnesses requiring transition to adult care. It also remains unclear as to what extent clinical practice guidelines (CPGs) for chronic physical illnesses address the transition from paediatric to adult care. This thesis contains three studies to advance knowledge on the transition process: 1) a systematic literature review on illness specific CPGs to ascertain how well the concept of transition is incorporated into these guidelines; 2) a retrospective narrative analysis of the previously compiled development records of a mobile application to support the transition process; 3) a feasibility study using this generic (non-illness specific) mobile application (App) in a clinical population to improve engagement and retention of AYAs with chronic illness within adult health service. The systematic review of peer reviewed and grey literature using the Preferred Report¬ing Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines assesses how transition has been integrated into CGPs for chronic illnesses (Chapter 3). The literature review found that a limited number of chronic physical illnesses have illness specific CPGs that address key transition principles. Limited availability of high quality evidence on transition to adult care is a major obstacle, resulting in policymakers relying on minimal evidence or expert opinion to develop chronic illness specific CPGs on transition. Chapter 4 presents a synthesis of the development process of the TransitionMate application (TM App) over several years, including the milestones of App development. TM App was developed as digital technology support for the AYA’s first year after leaving paediatric care where self-management is believed to deteriorate. The study described the challenges encountered during the TM App development process. A process that included extensive consumer involvement, high costs when using external rather than in-house development, continuing App maintenance requirements, and managing the translation of health language into technical terminology. In Chapter 5, a single arm pragmatic clinical trial using TM App was performed to test the feasibility and the efficacy of the TM App with transitioning AYAs on engagement and retention with the adult health services and to determine deterioration of illness control and unplanned hospitalisations post transition. Unfortunately, the TM App was not used extensively enough to determine its effectiveness during transition. Despite minimal use of the TM App, 68% of AYAs engaged, and 66% of AYAs were retained within the referred adult health services. Quantitative data collected at baseline (age, chronic illness type, or the markers of illness control) and at six- and 12 months (markers of illness control) were not predictive of a successful transition. This thesis provides novel insights into overcoming gaps in knowledge by looking at how current processes (CPGs) and novel interventions (TM App) can assist in a smoother transition (Chapter 6). The importance of communication, policies, and strategic level contributions are highlighted, as these are needed to strengthen transition practices through the development of evidence-based transition to adult care enriched illness specific CPGs. Further, despite the booming digital technology industry, a mobile application approach may not be the most suitable solution to overcoming obstacles to the successful transition from paediatric to adult care for AYAs with chronic illnesses.