There’s no question that 2020 was a challenging year. Today, the effects of COVID-19 continue to echo around the world, impacting people’s lives, livelihoods and social connections.
In addition to navigating all this global uncertainty, an estimated 225,000 Canadians also faced a cancer diagnosis last year.
The Supportive Care Committee of the Canadian Cancer Trials Group (CCTG), a cooperative oncology group that designs and administers clinical trials in cancer across Canada, began asking questions about how the pandemic would affect cancer patients’ and survivors’ lives as soon as the first round of lockdowns started in Canada in March 2020. By April, the committee had the ball rolling on a quality-of-life study called Living with Cancer in the Time of COVID-19. The study focuses on adults who either have cancer or have had cancer in the past 10 years to better understand how the pandemic is affecting their care and mental health.
“The goal is to get a better picture of what it’s like for people going through this so we can develop the kinds of services they need.”
—Dr. Linda Carlson
“When the pandemic started, we knew this was going to affect cancer patients in many different ways,” says Dr. Linda Carlson, a professor in the departments of oncology and psychology at the University of Calgary and Enbridge Research Chair in Psychosocial Oncology. Carlson is also a member of the CCTG’s Supportive Care Committee. “We just didn’t know in how many different ways. Some things are potentially positive for patients because they can get care at home and travel less, but there are drawbacks, too. Treatments and surgeries were delayed, and there was a lot of talk about being at higher risk of death or complications if they were to get COVID.”
In August, the CCTG launched a website and began recruiting participants from cancer centres across Canada and through social media. Carlson and her colleague, Dr. Mohamad Baydoun, a postdoctoral fellow from the U of C, are the local leads in Alberta for the trial, and received a $20,000 grant from the CCTG to support study recruitment in the province.
Currently, around 115 people have responded to recruitment requests from across Canada, but Carlson says the goal is to reach 1,000 participants over a six-month recruitment phase. Over the course of a year, starting from when they first respond, these participants will complete five online questionnaires measuring their emotional and physical well-being, including questions about the quality of their cancer care, emotional distress and anxieties about COVID-19.
“Cancer patients will often [jokingly] say to me, ‘Now it’s like the whole world has cancer,’” says Carlson. “With cancer treatment, you don’t really know if the treatments are going to work, what the side-effects will be or if you’re going to be cured. It’s the same with the pandemic: is it going to get worse before it gets better? How many people will die? And what does this mean for people with cancer to have all these uncertainties piled on top of what they’re already dealing with?”
By taking a deep dive into how the pandemic is affecting the quality of life and health care of cancer patients and survivors, Carlson hopes they can make positive changes in the future.
“The goal is to get a better picture of what it’s like for people going through this so we can develop the kinds of services they need,” she says. “We’re asking people what would be helpful and finding out from them what the hardest part of this experience is and how we, as a health-care system, can better plan and prepare for future pandemics.”