The establishment of a registry for juvenile idiopathic arthritis patients in South Australia

Abstract

Juvenile idiopathic arthritis (JIA) is a complex term that describes inflammatory chronic arthritis that occurs in children and adolescents for unknown reasons. There is still no cure for JIA, though drugs and treatments can control and lessen the disease duration. However, the disease progresses in fluctuation and lifelong effects are experienced by nearly half of the patients and their families. For several patients with JIA, functional ability and psychosocial health are the chief elements of their wellbeing. Despite good control of arthritis and the increasing understanding of patient-centred care, epidemiology and characteristics of JIA patients are indistinct, especially in South Australia (SA). Further, patient-reported data and experiences are increasingly being emphasised in paediatric rheumatology clinical practice worldwide. For these reasons, it is imperative to utilise appropriate measures to draw an overall picture of current clinical practice for the JIA populations in SA. The aim of this thesis was to set up a JIA registry in SA that would enable the evaluation of disease activity, disease outcomes, and the status quo of treatment, and present data from the first phase (Chapter 3). These studies also explored the relationship between routine clinical outcomes and patient-reported outcome and experience measures (PROMs and PREMs) (Chapter 4). To support the accuracy and feasibility of our registry method by verifying the evidence on experiences of living with JIA, a qualitative systematic review including 10 studies and 61 findings was accomplished (Chapter 2). The findings presented in this thesis highlighted the unique characteristics of this cohort in comparison to other published studies (Chapter 2 - 4). The results of these studies also supported that patients and parents still report some negative experiences, despite better clinical-measured scores (Chapter 3 & 4). This picture will be used to direct local clinical practice and, most significantly, guide the development of new strategies to optimise treatment and care in JIA. Further studies are necessary to elucidate the complex relationship between both PROMs and PREMs and clinical outcome measures.