Are you under 25 with a cancer diagnosis, or looking after someone who is? Or, did you have a cancer diagnosis before you turned 25?
Cancer symptom management priority setting - children and young adults
Investigators: Professor Meera Agar, Ingrid Amarth-Duff, Dr Natalie Bradford, Linda Brown, Dr Sungwon Chang, Dr Ross Drake, Associate Professor Anthony Herbert, Associate Professor Tracey O'Brien, Associate Profesor Marianne Phillips, Dr Jessica Ryan, Dr Tim Luckett, Dr Ursula Sansom-Daly, Manraaj Sidhu, Dr Vanessa Yenson.
Sponsor: Cancer Symptom Trials, Faculty of Health, University of Technology Sydney.
"Symptom and Side Effects" Defining priorities in cancer symptoms for paediatric, adolescent and young adult patients: An Australian/New Zealand modified Delphi study
There is no national consensus of cancer symptoms that have the most impact on daily life for children & AYA in Australia and New Zealand (ANZ) despite access to current management strategies, which should be the primary focus of research efforts. There is a need for a comprehensive investigation of the cancer symptoms in ANZ paediatric and AYA patient populations, at both the acute and chronic stages of the disease and survivorship, where the gaps in evidence are such that these contribute to significant impacts on daily life.
This modified Delphi study aligns with the vision of Cancer Australia to reduce the impact of cancer, address disparities and improve outcomes for people affected by cancer. It also aligns with and will add information to the recent recommendations by the Clinical Oncology Society of Australia (COSA) for a model of ongoing care for cancer survivors that uses 1) a systematic, coordinated approach with 2) stratified pathways based on needs and risk, 3) that supports wellness, healthy lifestyle, primary and secondary prevention 4) with a living survivorship plan to facilitate communication between providers, and 5) calls for equitable access to services when needed.
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Surveys
We want to use a survey to identify the most troubling symptoms or side effects of your illness or treatment. We can then use this information to direct research and clinical trials to improve quality of life and help others going through this journey. This is the first survey of its kind in Australia and New Zealand.
We will ask you questions about some common physical symptoms. You can also add your own symptoms if you have had some that aren't already included. Our questions will mainly be about physical symptoms. We know that there are lots of emotional issues when dealing with cancer and its treatment. These issues are covered by other research groups and won't be the focus of this survey.
This survey is being conducted by a team of investigators from Cancer Symptom Trials (CST) at the University of Technology Sydney. We are working with specialists from hospitals in Australia and New Zealand.
We appreciate your time in answering this survey. It should take 10 - 30 minutes to complete. You can take a break at any time and come back to it later if you want to.
This survey closed on 30 June 2023.
If you have any queries, please email cst@uts.edu.au.