Helping Kids with Cancer Speak for the Supportive Care They Need
, by Sharon Reynolds
Two studies examined whether a tool called SSPedi could help young patients being treated for cancer report their symptoms.
The simple act of asking young patients about their symptoms regularly during cancer treatment can help them get more supportive care and reduce distressing side effects, according to the results of two new clinical trials.
In both studies, patients aged 8–18 being treated for cancer filled out brief surveys about their symptoms, with the responses sent directly to their care teams. The groups who completed the surveys reported experiencing fewer cancer-related symptoms—such as fatigue, changes in appetite, and problems like feeling sad or scared—than those who did not complete the surveys.
Results from the two trials, which were funded in part by NCI, were published November 13 in JAMA and JAMA Pediatrics.
Studies testing the use of patient-reported outcome (PRO) surveys in adults have shown that they can give a far more accurate picture of how someone is feeling during cancer treatment than a report from an observer, such as a family member or health care provider.
But it’s been unclear whether young patients could provide feedback on their symptoms during the stress of cancer treatment, explained Lillian Sung, M.D., Ph.D., of The Hospital for Sick Children (SickKids) in Toronto, who co-led the new studies.
“One of our big questions has been: Can we do this in children?” said Dr. Sung. “The fact that the answer is ‘yes’ is very exciting.”
The larger of the two trials also defined ahead of time for care providers what treatments kids should get if they reported certain symptoms. That’s important, said Lori Wiener, Ph.D., of NCI’s Pediatric Oncology Branch, who was not involved with the trials, because for PROs to make a difference, pathways must exist to help busy nurses and doctors respond to the needs their young patients identify, she added.
“That’s why this study is so exciting—because they married the [symptom] screening with guidance for providers on how to respond to this information, so that it could truly have an impact in an immediate and very systematic way,” Dr. Wiener said.
The findings also highlight an all-too-common problem in oncology, Dr. Sung said.
“I worry that children and parents think that they have to suffer to be cured,” she said. “But we have interventions to prevent and alleviate suffering, and I think their use needs to become an expectation.”
Both survival and symptoms matter
The treatments that have led to the large jump in survival from childhood cancers over the last half century come with substantial side effects. These can include symptoms like pain, nausea, and hair loss during treatment. They can also include lifelong consequences, such as disrupted growth and brain development.
“The emphasis in pediatric cancer has been on survival. But that means that we’ve traditionally paid less attention to issues like symptom burden,” Dr. Sung said.
Researchers have started to test whether recent gains in survival can be maintained while decreasing the harms of cancer treatment, including putting a greater focus on managing symptoms during treatment for children with all types of cancer.
But symptoms can’t be managed if they’re not reported. Traditionally, doctors have asked parents or guardians about how their kids are feeling, said Dr. Wiener. But these adults may underestimate or overestimate a child’s symptoms and may not appreciate what symptoms the child finds most distressing, she explained.
“What parents observe or think they know isn’t necessarily what the child is experiencing,” agreed Dr. Sung. This can be especially true for things like anxiety and depression, she added.
So Dr. Sung and her colleagues developed an outcomes reporting tool specifically for young patients to use to report their own symptoms. The tool, called SSPedi (pronounced “speedy,” as it’s designed to be completed in just a few minutes), asks about how bothersome each of 15 common symptoms are.
The tool then captures this information in a single SSPedi score that ranges from 0 to 60. For the clinical trials, the tool was embedded in a web application called SPARK, which could be accessed through a phone, tablet, or computer.
What’s measured can be improved
To test whether using this tool could help detect symptoms and lead to quicker relief for patients, Dr. Sung and her colleagues first designed a short study that enrolled 345 kids and teens aged 8–18 from eight pediatric cancer treatment centers in Canada. All were undergoing cancer treatment in a hospital setting.
The researchers randomly assigned the young participants to either fill out the SSPedi through SPARK on a tablet once a day for 5 days or to receive the usual supportive care delivered by participating hospitals.
For those in the SSPedi group, SPARK reports were printed out daily and delivered to members of the participant’s care team. Those in the usual care group completed the SSPedi at the start and end of the study for comparison, but the results weren’t shared with their care providers.
After 5 days, kids who reported their symptoms daily had lower SSPedi scores than those in the usual care group. And for 8 out of the 15 individual symptoms, the participants in the SSPedi group found these symptoms less bothersome than those in the usual care group.
| Feeling disappointed or sad | Feeling tired | Throwing up/feeling like may throw up |
| Feeling scared or worried | Mouth sores | Feeling more or less hungry than usual |
| Feeling cranky or angry | Headache | Changes in taste |
| Problems thinking or remembering things | Hurt or Pain (not headache) | Constipation |
| Changes in how your body or face look | Tingly or numb hands or feet | Diarrhea |
In their second trial, the researchers randomly assigned 20 pediatric cancer centers in the United States to either use SSPedi three times a week for all patients aged 8–18 newly diagnosed with cancer or to address care for symptoms and side effects (called supportive care) as they normally would. Centers using SSPedi also developed their own treatment plans, or care pathways, for how the SSPedi scores would be used to help manage symptoms.
“These pathways are the only way you’re going to make [using PROs] successful,” said Dr. Wiener. “When pediatric patients come to the clinic, they’re often very rushed. They have to see the doctor. They have to have lab work [and] imaging scans. They don’t have a lot of time for a comprehensive psychosocial evaluation.”
As in the first trial, filling out the SSPedi was left to the kids and teens themselves, although they could choose to have their parents or guardians receive a notice about the need for SSPedi to be completed.
After 8 weeks, kids who regularly reported their symptoms had lower SSPedi scores compared with kids in the usual care group, indicating fewer symptoms in the reporting group. And they experienced less bother from 12 of the 15 individual symptoms.
Many questions, many options to prevent suffering
“These trials in JAMA and JAMA Pediatrics are practice changing,” and provide the first evidence from large clinical trials in children “of the benefits of remote symptom monitoring with electronic patient-reported outcomes,” wrote doctors from the University of North Carolina at Chapel Hill, Children’s Hospital of Philadelphia, and Duke University in an accompanying editorial in JAMA.
Many questions remain, said Dr. Sung, including understanding what level of symptom reduction is meaningful for young patients. That’s likely to differ from kid to kid, as will the symptoms that are most bothersome. This makes measuring symptoms the starting point of a conversation between young patients and their doctors, not the end of it, she added.
“But that’s also why it’s important that we didn’t improve just one or two symptoms—we improved most of them,” she said.
More work is also needed to understand how to help providers apply evidence-based care for symptom management, explained Dr. Sung, as fewer young patients than expected received care as directed by the care pathways.
SSPedi is currently being integrated into Epic, one of the largest electronic medical records systems in the United States and Canada. This will let hospitals start to incorporate pediatric PROs in their workflow, Dr. Sung said.
Her team has also developed and tested a screening tool called co-SSPedi, which is designed for kids aged 4–18. “This tool is completed by the child and parent together. The idea is that it’s the child who’s offering their [experience] first, and the parent is supporting them in completing [the screening],” she said.
Other symptom screening tools for kids are now available or are under development. For example, Dr. Wiener and colleagues at the National Institute of Mental Health partnered with the nonprofit Cancer Support Community to develop a tool at the NIH Clinical Center in Bethesda, MD called Checking IN. That tool is now commercially available.
To date, she explained, they’ve found that more than half of providers have made treatment changes “based on what they read in a child’s [Checking IN] report,” she said. “We want to capture a child’s well-being in a standardized, consistent and useful way, leading to quick referrals and the best supportive care possible.”