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Mapping symptom burden to improve quality of life for adolescents and young adults with cancer

How does cancer affect adolescents and young adults with cancer? What kind of side effects do they experience from treatment and how do these symptoms affect their outcome?

These are just some of the questions that Dr. Sumit Gupta, a pediatric oncologist at The Hospital for Sick Children (SickKids) in Toronto, will try to answer thanks to a recently granted Terry Fox New Investigators Award. Dr. Gupta will receive $270,000 over two years from the Terry Fox Research Institute and the Canadian Institutes of Health Research to do his research.

“We know very little about the symptoms that adolescents and young adults with cancer experience, but we believe that these symptoms may follow different patterns, magnitudes and trajectories than experienced by either older or younger patients. We also suspect that symptom burden can affect outcomes for some patients,” says Dr. Gupta. “Our study hopes to map exactly what these cancer-related symptoms are in a large population of adolescents and young adults with cancer in order to improve their cancer experience, and potentially, their outcomes.”

To map these symptoms, Dr. Gupta will rely on a questionnaire known as the Edmonton Symptom Assessment System (ESAS), which every cancer patient in Ontario fills out every time they go into a cancer care facility. In total they will draw from information provided by 8,700 patients between the ages of 15 and 29 who were diagnosed with cancer in Ontario from 2010-2017.

This robust data will allow them to conduct the first-ever population-based analysis of the cancer symptom burden that this group experiences, what that looks like over time, how that varies by diagnosis, and what is being done to address those symptoms.

“Our results will help design interventions aimed at controlling the most bothersome symptoms and will also identify which patients should be the target of these interventions because they are at a high risk of suffering from the worst symptoms,” says Dr. Gupta. “Ultimately, our goal is to find ways to improve the quality of life of adolescents and young adults being treated for cancer.”

As part of the award, he will be mentored by a CIHR program to evaluate survival, patient-reported outcomes and costs for advanced gastrointestinal cancers led by Dr. Natalie Coburn (Sunnybrook Research Institute).

“These resources will allow us to concentrate on the adolescent and young adult population and really take a deep dive into what their symptom burdens look like,” says Dr. Gupta. “Having someone like Dr. Natalie Coburn as a mentor will allow me to work with world-leading experts and develop those methodological skills to be able to further apply them to this population in the future.”

“Dr. Gupta’s work addresses a clear need for research in a vulnerable and underrepresented population of adolescents and young adults (AYAs) diagnosed with cancer,” says Dr. Coburn. “His project will advance knowledge in the field of patient-reported outcomes in cancer and will provide findings that could rapidly be transmitted to the cancer community in Canada and to infrastructure in Ontario.”

Read more about all the 2020 Terry Fox New Investigator Award recipients here.

Mentoring program: An evaluation of survival, patient-reported outcomes and costs for advanced gastrointestinal cancer

Mentor: Dr. Natalie Coburn