Beyond Pain: How UCSF Research Is Improving Pediatric Palliative Care

For more than 500,000 children in the United States living with a serious illness, the battle is fought on many fronts. Beyond the disease itself, there is a daily struggle with a host of distressing symptoms that can diminish quality of life.

Pediatric palliative care provides an active, positive layer of support that focuses on easing these issues and improving comfort for children and their families.

Now, a new, large-scale study led by the UCSF Department of Pediatrics and the UCSF Division of Palliative Care challenges common assumptions about childhood suffering. Published in The Journal of Pediatrics, the research reveals a fuller picture of what seriously ill children experience – and how palliative care can be even more effective.

The Surprising Reality of Childhood Symptoms

The study analyzed more than 1,700 inpatient encounters from the multi-site Pediatric Palliative Care Quality Network, finding that moderate-to-severe fatigue and feeding issues were more prevalent than severe pain.

“The idea that pain is the most common and distressing symptom is on people’s minds, and we dedicate more inpatient resources to pain than other symptoms,” explains Andrea Postier, PhD, MPH, first author of the study and a palliative care researcher at UCSF's Department of Pediatrics.

“Our findings highlight the importance of routine assessment for issues beyond pain,” says Postier. “We know from previous research that if we don’t ask, we won’t find out, and if we don’t routinely document symptoms, they are unlikely to be addressed.”

The Hidden Story in a Child's Symptoms

The research also uncovered that certain non-pain symptoms may provide crucial information about a child's prognosis. The study found that moderate-to-severe fatigue, feeding issues, and shortness of breath at the initial palliative consultation were associated with a higher likelihood of in-hospital death.

While it’s too soon to say these symptoms are definitively prognostic, their presence can serve as important red flags.

“These symptoms should alert clinicians that a child’s situation may be more serious than it appears,” Postier notes. “And when these symptoms don’t disappear after interventions, we should stop and think about the bigger picture and how they relate to the patient’s underlying disease process.”

Awareness of these trends can prompt palliative care teams to initiate timely and compassionate conversations with families about their goals of care.

From National Data to Local Impact

For children and families at UCSF, this national research has a direct local impact. The UCSF Stad Center for Pediatric Pain, Palliative and Integrative Medicine used these findings to identify opportunities to improve routine symptom documentation. This critical step helps ensure a child's full range of symptoms, from fatigue to pain, is consistently tracked and proactively managed.

The Power of Palliative Care

The study provides valuable insights into gaps in care and reveals new ways for how palliative care can better support children with serious illnesses.

“These children often have multiple distressing symptoms, and palliative care teams help assess and treat them alongside other clinicians and specialists,” says Postier. “Palliative care teams have advanced training treating complex symptoms and leading delicate, big picture discussions with patients, families, and care teams when needed.”

This comprehensive support often leads to a wide range of improved outcomes, including better symptom management, higher satisfaction with care, and improved coping for the entire family throughout the illness. For a child facing serious illness, palliative care is essential medicine.

Authors: Other UCSF authors are Stefan Friedrichsdorf, MD, David O’Riordan, PhD, and Steven Pantilat, MD. For all authors, see the paper. 

Funding: No external funding was received for this study.