The AYA Distress Thermometer International Validation Study
The AYA Distress Thermometer (DT) Validation Study is an international project led by Canteen which aims to validate the DT and Problem Checklist (DT/PCL) for AYAs with cancer. The DT/PCL includes a screener for distress and a checklist covering physical, emotional, social, practical and family domains as well as information needs. The validation is determining the most appropriate cut-off for the DT as well as whether all items in the checklist are appropriate. The DT/PCL is being validated with both newly diagnosed AYAs (patients) and those who have finished treatment (survivors). The project is also investigating the clinical utility of the DT/PCL and identifying the predictors of distress for both AYA patients and survivors.
The patient arm of the study is now closed with a final sample of 288 patients globally. Australia contributed 118 patients. Analysis of this data is progressing well, with articles planned for publication in 2020. The survivorship arm of the study is currently open and recruiting participants from around Australia. In consultation with YCS staff, we are expanding the eligibility criteria to capture the views of a larger proportion of AYA cancer survivors. We are also planning to better utilise technology and increase flexibility around data collection so that young patients can complete the survey in a time and location that best suits them.
Presenting to IPOS 2019 World Congress
A/Prof Pandora Patterson and Dr Fiona McDonald from Canteen presented two papers on the DT Validation Study at the 2019 World Congress for the International Psycho-oncology Society (IPOS) in Canada in September. These were part of a special international Symposium about the use of the DT tool with AYAs. The papers were:
For access to the full abstracts, head to: https://journals.lww.com/jporp/toc/2019/09001 p. 17-18, S15-423 and S15-424.
Experiences of Care (EoC) Project
The Experiences of Care (EoC) Project is an Australian survey-based study aimed at understanding AYA cancer patient and supportive others’ (i.e. parents, partner, sibling) perspectives of their experiences of care across the treatment pathway, from diagnosis to completion of treatment with a YCS affiliated hospital. The survey is available to AYA patients and their supportive others who completed treatment through a YCS affiliated service on or after January 2015.
To date, 117 AYA patients and 74 supportive others have completed the study survey across 13 sites within NSW, VIC, SA and QLD. With a rapid increase in active sites and the approval to recruit from all Australian jurisdictions in late 2019, it is expected that recruitment will increase at a steady rate throughout 2020.
Preliminary data were presented at the Paediatric Oncology Group of Ontario Multi-Disciplinary Symposium in November 2019 by Canteen’s CEO, Peter Orchard.
Early analysis indicates that 96% of young people and their loved ones are satisfied with the support and assistance provided by the YCS.