Understanding treatment needs to improve care and outcomes for children and adults with rheumatic conditions and their caregivers.

Abstract

The importance of involving the patient in making decisions about their health care and in turn for clinicians to understand the patient’s perspective is recognised. Building on the existing literature, within this thesis a systematic review of outcome measures reported in myositis randomised control trials was conducted and identified that the majority of outcomes reported were surrogate markers and there were few patient reported outcome measures (PROMs). It was also identified that there was very limited data about patient and caregiver experiences in Juvenile Dermatomyositis (JDM) research and to further investigate this, two qualitative research projects were conducted. The first explains the experiences and perspectives of parents who have children diagnosed with JDM and the second study examines parents’ perspectives on the outcome measures important to them.

Part 2 of this thesis evolved after the COVID-19 pandemic to investigate the current landscape of telemedicine in Australia and the patient’s perspective of utilising these services. A narrative review was conducted examining how telemedicine is utilised in health care in Australia and the benefits and the disadvantages, in the management of chronic disease and more specifically rheumatic diseases. A qualitative study was then carried out, investigating the experiences of rheumatic disease patients in a metropolitan centre, that provides insights into the patient’s perspective when using telemedicine, to help inform clinicians and administrators as to how to best use this modality to improve health outcomes.