Using Their Own Words: AYA Cancer Patients as Influencers in COG Clinical Trials (C216)

9:45 am – 10:45 am Friday, September 16
Adolescent and young adult (AYA) cancer patients continue to be a conundrum for providers, researchers, and health care systems. Previous challenges for AYA oncology care have been identified as delayed diagnosis, lack of insurance, limited clinical trial availability and enrollment, tumor biology, unique toxicity profiles, distinct psychosocial issues, and more. While there has been advancement in the treatment of AYAs with cancer, there is a paucity of information about how that treatment impacts the AYA cancer patient’s life, both during treatment and beyond.
The Children’s Oncology Group is leading efforts to address the quality of life for AYAs with cancer with the creation of the AYA Patient-Reported Outcomes Task Force. This task force is combining cooperative group representatives from the National Clinical Trials Network (NCTN) (including COG and several adult consortia) to standardize the collection of patient-reported outcomes from AYAs participating in clinical trials. This first of its kind collaboration is gathering information directly from AYAs on how cancer and cancer treatments affect their symptoms and quality of life. Nontraditional methods for research data collection are an important aspect of this effort, as AYAs are less likely to participate in pencil and paper approaches. This session will walk through the treatment experience of AYAs with cancer through their own words, from diagnosis, treatment, and survivorship, providing an eye-opening perspective. With emphasis on the individual journey each AYA with cancer faces, nurses will gain appreciation of the lessons we can learn about the importance of what happens outside the hospital and clinic. Only with a multidisciplinary collective effort through the COG and other cooperative groups can we begin to understand the patient experience of AYA cancer and treatment and develop relevant and timely strategies for progress.