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Research Highlight | May 06, 2022

Study identifies gaps in measuring symptom burden in Ontario adolescents and young adults with cancer

A study by a Terry Fox New Investigator researching how symptom burden affects the quality of life and outcomes for adolescents and young adults (AYA) diagnosed with cancer in Ontario has revealed gaps in the provincial program designed to measure these symptoms in cancer patients.

The study, published in Cancer Medicine (October 2021) and led by Dr. Sumit Gupta, a pediatric oncologist at The Hospital for Sick Children in Toronto, found that while most AYA patients are being properly screened though the program, some are falling through the cracks.

“It’s important to note that the system is actually quite good at reaching AYA in general,” says Dr. Gupta. “But there are some groups of AYA, namely those with blood cancers and those who live in poor urban areas, who are not being screened for their symptoms, which is a gap that must be addressed.”

To identify this gap, Dr. Gupta relied on a questionnaire known as the Edmonton Symptom Assessment System (ESAS), which cancer patients in Ontario fill out every time they go into a cancer care facility. These tests are designed to systematically ask cancer patients at every visit about their symptoms, to help doctors better manage them.

“We know that improving symptom control is really important to cancer patients, including AYA, and that better control is associated with better quality of life and in some cases even better cancer outcomes,” says Dr. Gupta. “This is why it’s important to identify how well the system is working.”

To assess the system, Dr. Gupta and his team analyzed ESAS scores from 5,435 patients aged 15 to 29 who were diagnosed with cancer in Ontario between 2010 and 2018. This gave them a thorough understanding of who was being screened for their symptoms and who wasn’t.

“Identifying these groups means that we can now design interventions aimed at increasing screening rates among these patients,” says Dr. Gupta. “More broadly, it helps set the stage for future work looking at the type, duration, and severity of symptoms AYA experience, whether AYA-specific symptom screening tools would help increase rates in these patients, and whether completing screening tools actually leads to interventions for their symptoms.”

Dr. Gupta’s research project

With a New Investigator Award from the Terry Fox Research Institute and the Canadian Institutes of Health Research, Dr. Gupta is seeking to understand how cancer affects adolescents and young adults with cancer, what kind of side effects they experience from treatment, and how these symptoms affect their outcome.

To do this, he’s using ESAS scores to conduct the first-ever population-based analysis of the cancer symptom burden experienced by this demographic, with the goal of finding better ways to address these 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.”


The effectiveness of a provincial symptom assessment program in reaching adolescents and young adults with cancer: A population-based cohort study


Sumit Gupta, Rinku Sutradhar, Qing Li, Natalie Coburn


This study was funded by a Terry Fox New Investigator Award to Dr. Sumit Gupta for Measuring and targeting symptom burden among adolescents and young adults with cancer: A population-based study using routinely collected patient reported outcomes