With advancements in treatments, more children are surviving cancer than ever before - but many still face significant challenges.
That's because treatments may have short- and long-term side effects that profoundly impact children's quality of life.
More than 80 per cent of children diagnosed with cancer survive; for some types of cancer, such as Hodgkin lymphoma, the survival rates exceed 90 per cent, according to the Canadian Cancer Society.
"While we are seeing encouraging survival rates for kids diagnosed with cancer, children express severe bother due to the treatment they receive," says Lee Dupuis, a senior associate scientist and clinical pharmacist at the Hospital for Sick Children (SickKids) and a professor in the University of Toronto's Leslie Dan Faculty of Pharmacy.
"With the success of treatments, now we can think about making these treatments kinder - whether through refining treatment or through providing better supportive care that addresses what kids actually need and want."
Children may experience significant physical symptoms of cancer and its treatment, including nausea and pain. But they can also experience symptoms affecting their mental health and well-being such as anger and depression. While clinicians have known about these side effects for years, they didn't have a standardized tool to collect this information.
As a pediatric oncologist at SickKids, Lillian Sung notes that asking young patients and their parents about their symptoms informally during an appointment doesn't always reveal the full picture.
"There is a gap between how we think we're assessing patients and what they're really feeling," says Sung, who is also chief clinical data scientist and senior scientist at SickKids, and a professor at U of T's Institute of Health Policy Management and Evaluation at the Dalla Lana School of Public Health and in the department of pediatrics in the Temerty Faculty of Medicine.
"If we don't ask patients specifically about certain symptoms, they may not think to tell us."
To address this gap, Dupuis and Sung have been developing a symptom-screening tool for children with cancer as well as care pathways to help clinicians manage those symptoms. They recently published research demonstrating that the tool reduces symptom burden in children.
Tool records patient reports for range of physical and emotional symptoms
In an effort to provide children with the same types of tools that have helped adult patients - who, in Ontario, use a symptom-reporting tool called "Your Symptoms Matter" - Dupuis and Sung began developing the Symptom Screening in Pediatrics Tool (SSPedi, pronounced "speedy") more than a decade ago.
"Children's needs are not the same as adult supportive care needs, so we had to create a tool to allow kids to voice their unique supportive care needs," says Dupuis. "Children need to have a real voice and express the degree to which they're bothered by a symptom."
SSPedi allows children to report how bothered they are by 15 common symptoms of cancer and its treatment, ranging from physical symptoms like nausea and diarrhea to emotional symptoms such as anger and depression. Children indicate their level of bother for each symptom on a scale ranging from "not at all bothered" to "extremely bothered."
Since SSPedi was first developed, the team has refined and validated the tool, and it has been translated into different languages, including French, Spanish and Arabic. The researchers have also worked on developing care pathways to offer health-care providers evidence-based interventions to manage bothersome symptoms once they are identified.
Recent research demonstrates SSPedi reduces symptom burden in kids
Dupuis and Sung recently published two studies demonstrating the value of using SSPedi for symptom reporting in children.
In one large trial involving 20 U.S. cancer centres, published in JAMA , half of the centres used SSPedi to report symptoms and SPARK to share scores with the clinical team, while the other half provided usual care. The team found that children who reported their symptoms three times a week for eight weeks had a significantly reduced symptom burden.
In a smaller trial in Canadian centres over a shorter period, published in JAMA Pediatrics , the researchers found that reporting symptoms daily for five days helped to improve symptom scores.
Together, the two papers demonstrate the value and importance of symptom reporting in children with cancer.
"Every health-care professional and parent wants to do the right thing, but they need trustworthy evidence and pathways that act on that evidence," says Dupuis. "By identifying what bothers kids, we can provide health-care professionals with the tools to best manage those symptoms - an extraordinarily powerful combination."
To facilitate pairing SSPedi with evidence-based care, the research team plans to integrate the tool into electronic medical records that will allow all members of the clinical team to see patients' scores.
"I think people think that you're supposed to feel bad when you're going through cancer treatment, but it doesn't have to be that way," says Sung. "We can help people with a lot of these symptoms.
"Our goal should be to minimize as many of these symptoms as we can, so the quality of their experience is as good as possible and they grow up to be happy, healthy, well-adjusted adults."
