Validating the Distress Thermometer tool for adolescents and young adults with cancer
What is the project about and why is it important?
Hearing and dealing with the news of a cancer diagnosis is typically associated with high levels of distress for adolescents and young adults (AYAs). Early detection through distress screening is important in preventing long term mental health issues for these young people. This study evaluates the Distress Thermometer (DT) with young people who were recently diagnosed with cancer, and with young people who recently completed their treatment for cancer.
The DT is a widely used distress screening tool and has been validated with adults, but young people, especially those under 18 years, have previously been excluded from these studies. As such, there is currently no validated instrument to measure distress in this group. In addition to validating the DT for AYAs, this study also looks at prevalence and predictors of distress for AYAs with cancer.
Young people attending a Youth Cancer Service (YCS) may be invited to take part in this study by their YCS team. Completing the Distress Thermometer and Problem Checklist is part of the normal care that young people receive from a YCS. For those who choose to participate in the study, they will also complete a survey asking some general information about them and their cancer diagnosis, their thoughts and feelings since receiving a diagnosis, the support they receive from friends and family, and how easy they find health information to understand.
In addition to the survey, participants may choose to take part in an optional telephone interview with a Canteen researcher a few months after completing the survey. During the interview the researcher will ask about the experience of completing the Distress Thermometer, and how things have been going since then.
The study has been approved by the following Human Research Ethics Committees: the ACT Health Human Research Ethics Committee; Children’s Health Queensland Hospital and Health Service; the Northern Territory Department of Health and Menzies School of Health Research; Peter MacCallum Cancer Centre (VIC); the Sir Charles Gairdner Group (WA); South Eastern Sydney Local Health District (NSW); and the Women’s & Children’s Health Network (SA). Governance approval has been granted by each hospital that is participating in the study.
Young people can participate in this study if they are 15-25 years old, have been diagnosed with cancer, and are attending a YCS as part of their treatment and/or survivorship care. If you are interested in taking part please contact your YCS.
Patterson, P., McDonald, F., Anazodo, A., Costa, D., Wakefield, C., White, K., Thompson, K., & Osborn, M. (2015). Validation of the Distress Thermometer for use amongst Adolescents and Young Adults with Cancer in Australia: A Multi-Centre Study Protocol. Clinical Oncology in Adolescents and Young Adults, 5, 51 – 62. doi: 10.2147/COAYA.S83811
Patterson, P., McDonald, F.E.J., Tindle, R., Noke, M., Osborn, M., Matthews, K., Costa, D., White, K., Thompson, K., Plaster, M., Henny, R. & Anazodo, A. (2018, December). Healthcare professionals’ and AYA cancer patients’ perspectives of using the AYA-modified Distress Thermometer tool: a clinical utility analysis. Paper presented at the 3rd Global Adolescent & Young Adult Cancer Congress. Sydney, Australia.
Patterson, P. (2018, October). National implementation of a distress screening protocol to identify risk and build resilience for adolescents and young adults with cancer. In Grundy, P (chair) Adolescents and Young Adults with Cancer: why do they need our attention? Symposium conducted at the World Cancer Congress, Kuala Lumpur, Malaysia.
Patterson, P. (2014, December). The use of the modified Distress Thermometer in identifying and managing distress amongst AYA cancer patients. In Creating the best patient experience possible for Adolescents and Young Adults (AYAs) with cancer. Symposium conducted at the World Cancer Congress, Melbourne, Australia.
Patterson, P., McDonald, F.E.J., Anazodo, A., Costa, D., Wakefield, C.E., White, K., Osborn, M., Butow, P., Thompson, K., Plaster, M., Henney, R., Matthews, K. & Sidhu, M. (2014, July). Study protocol for the validation of the distress thermometer for use with adolescents and young adults diagnosed with cancer. Paper presented at the Teenage Cancer Trust 8th International Conference, London, UK.