Two new clinical trials have demonstrated that regularly asking young patients about their symptoms during cancer treatment can significantly improve their supportive care and reduce distressing side effects. The studies, published in JAMA and JAMA Pediatrics, found that using a symptom reporting tool called SSPedi led to fewer cancer-related symptoms in patients aged 8–18.
Direct Symptom Reporting Enhances Care
In both trials, young patients completed brief surveys about their symptoms, and the responses were directly sent to their care teams. The groups who completed the surveys reported experiencing fewer symptoms such as fatigue, appetite changes, and emotional distress compared to those who did not. This approach addresses a critical gap in pediatric oncology, where symptom burden has traditionally received less attention than survival rates.
Dr. Lillian Sung, of The Hospital for Sick Children (SickKids) in Toronto, who co-led the studies, emphasized the importance of enabling children to provide feedback on their symptoms. "One of our big questions has been: Can we do this in children? The fact that the answer is ‘yes’ is very exciting."
Integrating Screening with Care Pathways
The larger of the two trials pre defined treatment pathways for care providers based on reported symptoms. This integration of symptom screening with guidance for providers is essential for making a tangible impact, according to Dr. Lori Wiener of NCI’s Pediatric Oncology Branch. "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."
Trial Details and Results
One trial involved 345 children and teens aged 8–18 from eight Canadian pediatric cancer treatment centers. Participants were randomly assigned to either use SSPedi through a web application called SPARK daily for 5 days or receive usual care. After 5 days, the SSPedi group had lower symptom scores and found 8 out of 15 individual symptoms less bothersome.
The second trial involved 20 pediatric cancer centers in the United States, randomized to either use SSPedi three times a week with care pathways or provide usual care. After 8 weeks, children in the SSPedi group had lower symptom scores and experienced less bother from 12 of the 15 individual symptoms.
The SSPedi Tool
The SSPedi tool, designed to be completed quickly, asks about the bothersomeness of 15 common symptoms, generating a score from 0 to 60. Symptoms include fatigue, sadness, nausea, pain, and changes in appetite. The tool is now being integrated into Epic, a major electronic medical records system, to facilitate its use in hospitals.
Addressing Unmet Needs
These findings highlight the need to address the common misconception that children must suffer to be cured. "I worry that children and parents think that they have to suffer to be cured," said Dr. Sung. "But we have interventions to prevent and alleviate suffering, and I think their use needs to become an expectation."
Future Directions
While the trials demonstrate the benefits of symptom monitoring, further research is needed to determine meaningful levels of symptom reduction and to improve the application of evidence-based care for symptom management. Tools like SSPedi and Checking IN represent significant steps toward standardizing the capture of children’s well-being and ensuring they receive the best possible supportive care.
