The Patient-Reported Outcomes and Quality of Life team aims to improve the immediate and long-term quality of life of children, young people and families affected by cancer and other chronic health conditions.
Our projects focus on measuring what matters most to young people and their families – Patient Reported Outcomes such as quality of life, social wellbeing, education, mental health, sleep, and cognitive function – and then developing and implementing interventions in health services, to enable more proactive, patient-centred and efficient clinical care.
Our research seeks to bridge consumer priorities and health service offerings. To do so, we partner with community organisations including Ronald McDonald House Charities, Redkite and Canteen, to ensure our projects have real-world benefits for children and young people diagnosed with cancer or other chronic health conditions. We also partner with international organisations to conduct global research, including the World Health Organisation.
Our team includes a mix of clinicians and researchers with experience in consumer co-design, implementation science and evidence translation who work together on a range of projects. For example:
- We are currently working with consumers and clinicians to better measure and monitor physical and psychosocial quality of life through treatment and beyond in our projects ASSET and Kidsvoice.
- Our work on Reconnect seeks to better understand the broader social impacts (including social quality of life, education and career impacts) of cancer during survivorship.
- We are co-designing supportive information resources for young people with cancer to maintain their connections to school/education and career in Ready Steady School and BRIDGES-4AYA.
- We are working to amplify the voices of children, young people and families affected by cancer through the World Health Organization study assessing the Lived experience of people affected by cancer, and through leadership of the Kids Cancer Centre Family Advisory Committee.
