Making symptoms visible: the impact of real-time PROM integration in pediatric oncology

Abstract

Highlights: What are the main findings? Children with cancer often experience severe symptoms that go undetected, including appetite changes, fatigue, nausea and vomiting and pain. Use of Patient-Reported Outcome Measures (PROMs) could address this gap, but such measures are rarely implemented in routine clinical practice. What are the implications of the main findings? This study demonstrates the impact of routine PROM use on symptom detection and clinical workflow. Clinical algorithms enhance sensitivity for identifying symptoms but may increase alert burden highlighting the need for workflow and alert optimization. Background/Objectives: Children undergoing cancer treatment experience multiple distressing symptoms that often go undetected in routine care. This study evaluated the potential impact of integrating the Symptom Screening in Pediatrics Tool (SSPedi) into clinical workflows, focusing on symptom detection and implications for service delivery. Methods: Seventy children (aged 4–18 years) receiving active treatment, and/or their caregivers completed SSPedi weekly for eight weeks (n = 479 completions). Medical records were audited for documentation of symptom assessments and symptom prevalence. SSPedi completions were categorized using a clinical algorithm (low, moderate, immediate concerns) and compared with score-only threshold. Results: The most bothersome symptoms were appetite changes (12%), fatigue (11%), nausea/vomiting (9%) and pain (9%). Severe bother detected by SSPedi was more frequent while hospitalized than at home (e.g., appetite changes 17% versus 9%). Documentation rates of severe symptoms in medical records were substantially lower than SSPedi reports—12% when SSPedi was completed at home and 49% when completed in hospital. Applying the clinical algorithm flagged 58% of SSPedi completions as an immediate concern in home and 63% in hospital, compared with score-only thresholds (31% at home and 17% in hospital). Algorithm-based alerts for immediate concerns would have triggered almost twice as many phone calls as score-based thresholds (168 vs. 91). Conclusions: Routine PROM integration could improve symptom detection and timely intervention. Clinical algorithms enhance sensitivity but increase alert burden, highlighting the need to review thresholds and redesign workflows. © 2026 by the authors.