What Does Palliative Care Mean For Children With Cancer?

A new study led by Mass General Brigham suggests that a more proactive, tech-driven approach to palliative care can significantly improve the daily lives of children with advanced cancer.

The findings, published in the Journal of Clinical Oncology, highlight the PediQUEST Response intervention. This system combines weekly electronic symptom monitoring with specialized pediatric palliative care (SPPC). While palliative care is already a standard of care for adults, its application in pediatrics has remained inconsistent.

The randomized controlled trial followed 154 children, aged 2 and older, across five U.S. pediatric cancer facilities. The control group received standard oncology care and routine visits, while the intervention group received standard care plus PediQUEST support. This included personalized pharmacological and non-pharmacological recommendations based on symptoms the children and their parents reported through weekly electronic surveys.

After 16 weeks, both children and parents in the intervention group reported noticeable improvements in quality of life compared to their starting point. While the control group also saw minor gains, the PediQUEST group’s progress was more pronounced.

While, according to a news release from Mass General Brigham, the improvements did not quite reach the threshold of a minimally clinically important difference, the team believes the strategy offers a vital roadmap for reducing symptoms like pain, nausea and fatigue that are often mistakenly accepted as parts of the cancer journey.

CURE sat down for an interview with first author Dr. Veronica Dussel, an associate research scientist in the Department of Pediatrics at Mass General Brigham for Children, as well as senior author Dr. Joanne Wolfe physician-in-chief at Mass General Brigham for Children.

In the first installment of our conversation, Wolfe helped define palliative care in this context.

Transcript

In this context, for this patient population, what does palliative care mean?

In this study, palliative care involved care delivered by a specialty palliative care team. It's a team that is interprofessional, interdisciplinary, typically involving a doctor, a nurse or nurse practitioner, and a social worker, so a triad of clinicians whose area of expertise is to focus on the well-being of the child and family in the context of a serious illness, and so it's adding an extra layer of support and focusing and complementing the care of the primary oncology team by focusing on other elements of the child's experience, the child and family experience.

Importantly, palliative care specialists also care for children at end of life, should that need arise. However, many of the children that we care for, whether it's in cancer or outside of cancer, live and survive long term. So it's only really the context of serious illness that sort of invokes the support of a specialty palliative care team when consulted.

Reference

1. “Personalized Palliative Care Shows Signs of Improving Quality of Life for Children with Advanced Cancer,” news release; https://www.massgeneralbrigham.org/en/about/newsroom/press-releases/personalized-palliative-care-for-children-with-advanced-cancer.

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