How to reduce suffering in children with advanced cancer remains an ongoing but urgent question. A Mass General Brigham-led study examined whether systematically surveying children with advanced cancer and their parents about their symptoms and quality of life, providing feedback to children, families, and clinicians—and acting on that information by implementing personalized palliative care—could improve patients' experiences. Their findings, published in the Journal of Clinical Oncology , suggest that integrating feedback along with response by specialized pediatric palliative care (SPPC) has the potential to improve children's quality of life.
"We show that integrating routine electronic feedback with palliative care has the potential to ease suffering and enhance well-being in pediatric cancer patients," said first author Veronica Dussel, MD, MPH , an associate research scientist in the Department of Pediatrics at Mass General Brigham for Children .
Specialized palliative care focuses on reducing suffering by easing symptoms that patients and their families might think of as a "normal" part of cancer, such as pain, nausea, or fatigue. For adults with advanced cancer, specialized palliative care has been shown to improve quality of life and survival, and it is now part of the expected standard of care. However, for children with advanced cancer, specialized palliative care is still used inconsistently.
The researchers conducted a randomized controlled trial to examine whether combining feedback about the child's symptoms with specialized pediatric palliative care (SPPC) improved quality of life in children with advanced cancer (an intervention and study known as PediQUEST Response). The trial enrolled 154 children with advanced cancer, aged 2 years and older, at five pediatric cancer facilities across the United States.
Patients in the control group received standard care, including routine visits and oncology treatment. In addition to standard care, patients in the intervention group received palliative support, which included additional check-ins and personalized pharmacological and non-pharmacological recommendations based on the patient's electronically reported symptoms. Patients and parents in both groups completed weekly electronic surveys to document the children's symptoms and quality of life.
After 16 weeks, patients and parents both reported improvements in the quality of life of children who received the intervention compared to their baseline, while patients in the control group reported smaller improvements.
"Electronic tools can help patients more comfortably report on their symptoms and quality of life, and our results show that electronic surveys are most powerful when they trigger action, not just monitoring," said senior author Joanne Wolfe, MD, MPH , physician-in-chief at Mass General Brigham for Children .
However, the improvements seen in the SPPC group did not exceed the "minimally clinically important difference." The researchers say that this could be because the trial included patients with various types of cancer and because of inconsistencies between the clinical centers that carried out the trial. More research with larger sample sizes is needed to confirm these results.
"Our results show that integrating early palliative care is promising, but requires consistent delivery to be effective," said Wolfe. "Study sites with better adherence to the palliative care protocol saw more clinically meaningful benefits, showing that implementation matters."
Authorship: In addition to Dussel and Wolfe, Mass General Brigham authors include Madeline Avery. Additional authors include Liliana Orellana, Maria L. Requena, Denise Becker, Christina K. Ullrich, Chris Feudtner, Jason L. Freedman, Tammy I. Kang, Elisha D. Waldman, Cynthia A. Gerhardt, Marie A. Bakitas, Justin N. Baker, Stefan J. Friedrichsdorf, and Abby R. Rosenberg.
Disclosures: Author disclosures are available in the paper.
Funding: R01 grant No. 5 R01 NR016720-03 funded by the National Institutes of Health National Institute of Nursing Research.
Paper cited: Dussel, V et al. "Integrating Electronic Patient-Reported Outcomes and Palliative Care in Pediatric Advanced Cancer: The PediQUEST Response Multisite Randomized Controlled Trial" Journal of Clinical Oncology DOI: 10.1200/JCO-25-01036
