Child, Caregiver, and Nurse Symptom Reports in Oncology: Evidence for Prioritizing the Child's Voice.
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CONTEXT: . 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. OBJECTIVES: . 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). METHODS: . 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, family caregiver (FC), and nurse. Brief semi-structured interviews were subsequently conducted to explore reasons for discrepancies among raters. RESULTS: . 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. CONCLUSION: . These findings emphasize that assessing symptoms requires gathering firsthand information from the child and using validated tools.