New symptom reporting tool improves quality of life for children with cancer

Lee Dupuis and Lillian Sung at The Hospital for Sick Children (SickKids).

Thanks to advances in treatments for childhood cancer, more children are surviving cancer than ever before. According to the Canadian Cancer Society, more than 80% of children diagnosed with cancer survive; for some types of cancer, such as Hodgkin lymphoma, the survival is higher than 90%.

But this success comes at a cost. Treatments for childhood cancer can have side effects that may profoundly impact children’s quality of life, both during treatment and long after.

“While we are seeing encouraging survival rates for kids diagnosed with cancer, children express severe bother due to treatment they receive,” says Lee Dupuis, professor at U of T’s Leslie Dan Faculty of Pharmacy and senior associate scientist and clinical pharmacist at The Hospital for Sick Children (SickKids). “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.”

“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, such as nausea and pain. But they can also experience symptoms affecting their mental health and wellbeing, like anger and depression. While clinicians have known for many years that children experience these side effects, they didn’t have a standardized tool to collect this information.

As a pediatric oncologist at SickKids, Lillian Sung says that asking patients and their parents about their symptoms informally as part of their appointment didn’t always reveal the full picture of what a child is going through.

“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, professor at the Institute of Health Policy Management and Evaluation and Department of Pediatrics, University of Toronto, and Canada Research Chair in Supportive Care in Pediatric Oncology. “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 and developing care pathways to help clinicians manage those symptoms. They recently published research demonstrating that the tool reduces symptom burden in children.

It’s an approach that has also worked for adults, thanks to leadership from pharmacists.

Symptom management has improved care for adults with cancer

Supportive care and symptom management in adults has been a priority for cancer care teams since the early 2000s, with Ontario cancer centres playing leading roles in screening patients for symptoms.

In Ontario, adults with cancer complete standardized symptom screening at each appointment through a tool called “Your Symptoms Matter.” At every appointment, patients rate the severity of a range of symptoms, including nausea, fatigue, anxiety and depression. This regular and standardized screening helps clinicians to identify issues early and refer the patient to interventions to help them manage the symptoms and improve quality of life.

Research has shown that regular screening of symptoms and patient-reported outcomes has benefits for patients, ranging from being able to continue with treatments longer to having fewer ER visits and improved quality of life.

Kathy Vu, associate professor – teaching stream at the Leslie Dan Faculty of Pharmacy and Clinical Lead, Safety at Cancer Care Ontario (now part of Ontario Health), led guideline development for managing nausea and vomiting in people with cancer.

She says that in Ontario, pharmacists have been co-leading with nursing experts the implementation of symptom screening and care pathways for adults with cancer.

“We have found that we're able to handle symptom management much earlier and more effectively when we have professionals from different disciplines involved.”

“Symptom management is complex and requires a multidisciplinary approach, so in adult oncology, we have found that we're able to handle symptom management much earlier and more effectively when we have professionals from different disciplines involved,” says Vu.

“Pharmacists are experts in looking at the side effects and how to manage drug-related symptoms and side effects that patients may have. It just makes sense for patients to have experts from both nursing and pharmacy working together to provide more comprehensive care.”

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, 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 treatment, ranging from physical symptoms like nausea and diarrhea to emotional symptoms like anger and depression. Children report their level of bother for each symptom that day or the previous day 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. They 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 half of the centres provided usual care. The team found that children who reported their symptoms three times a week for eight weeks had significantly reduced symptom burden compared to those who received usual care.

In a smaller trial in Canadian centres over a shorter period of time, published in JAMA Pediatrics, they found that reporting symptoms daily for five days helped to improve their symptom scores.

Together, the two papers demonstrate the value and importance of symptom reporting in children with cancer.

“By identifying what bothers kids, we can provide health care professionals with the tools to best manage those symptoms – an extraordinarily powerful combination.”

“Every healthcare 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 scores with evidence-based care, the team plans to have SSPedi integrated into electronic medical records, such as EPIC, which will allow all members of the clinical team to see patients’ SSPedi scores. This opens the opportunity for each institution to direct clinicians to care pathways to manage symptoms and improve the quality of life of children with cancer, during and after treatment.

“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. We can help people with a lot of these symptoms,” says Sung. “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.”