Child, Caregiver, and Nurse Symptom Reports in Oncology: Evidence for Prioritizing the Child's Voice

Over the past few decades, survival rates for most childhood cancers have improved significantly. However, children still experience a substantial symptom burden. Gaps in symptom assessment persist, with an overreliance on proxy reports rather than children's self-reports.

This study aimed to compare children's self-reports with proxy reports from family caregivers (FCs) or nurses regarding common symptoms in children diagnosed with cancer or who have received a hematopoietic stem cell transplant (HSCT).

A multiphase mixed-methods study with successive age-stratified recruitment waves, guided by qualitative saturation, was conducted. Fifteen symptoms were assessed using SSPedi, completed independently by the child, FC, and nurse. Brief semi-structured interviews were subsequently conducted to explore reasons for discrepancies among raters.

Ninety children aged 8-18 years, along with their FCs and designated nurses (forming 90 triads), were recruited from two tertiary centers in Saudi Arabia. The most frequently reported symptoms among children were reduced appetite (11.1%) and nausea/vomiting (10%). Agreement between raters was significant for 12 of the 15 symptoms (P < .05), but most correlations remained weak. FCs tended to over-report symptoms. Children often did not fully disclose their discomfort. FCs and nurses relied more on observation than on seeking the child's input.

These findings emphasize that assessing symptoms requires gathering firsthand information from the child and using validated tools.