Caregiver-Assisted Early Warning Surveillance and the Path Toward a Digital Pediatric Early Warning System (PEWS) in Uganda

Childhood cancer survival in low- and middle-income countries (LMICs) remains poor, largely due to preventable episodes of clinical deterioration. Pediatric Early Warning Systems (PEWS) can facilitate early detection of deterioration but rely on frequent clinician assessments, which are often impractical in understaffed settings. Simplified caregiver-assisted monitoring tools, such as the Family-Assisted Severe Illness Therapy (FASTER) tool, have been shown to improve early recognition of clinical deterioration, enhance caregiver engagement, and strengthen communication between caregivers and healthcare providers in resource-limited settings. FASTER empowers caregivers to support bedside monitoring using a simple three-parameter algorithm; however, its application has not been evaluated in pediatric oncology populations. To address this gap, we evaluated the agreement between caregiver-generated FASTER scores and nurse-generated PEWS scores among hospitalized children with cancer at the Uganda Cancer Institute (UCI), with the aim of informing a scalable deterioration surveillance model.

We conducted a prospective correlational pilot study involving 50 caregiver–patient dyads admitted to the pediatric oncology ward at UCI. Caregivers were trained to perform FASTER assessments every 6 hours over a 48-hour period, while a study nurse independently recorded PEWS scores every 8 hours. Spearman's correlation and Cohen's kappa were used to assess score concordance and agreement across severity categories. Sensitivity and area under the receiver operating characteristic curve (AUC) were calculated to evaluate the ability of FASTER to detect PEWS-defined clinical deterioration. Feasibility and acceptability were assessed using adherence metrics and caregiver exit questionnaires.

A total of 372 paired assessments were analyzed. Caregiver adherence to scheduled FASTER assessments was high (93%). FASTER scores demonstrated a strong positive correlation with PEWS scores (ρ = 0.65, p < 0.001), with high sensitivity for detecting deterioration (96.7%) and excellent discriminative performance (AUC = 0.89). Acceptability was high, with 78% of caregivers rating the tool as "easy" to use. A critical implementation barrier identified was the absence of a real-time caregiver-to-nurse-to-physician alert pathway, which limited timely escalation and contributed to delays in clinical response.

Caregiver-assisted monitoring using the FASTER tool reliably identified early signs of clinical deterioration, demonstrating a feasible and equity-enhancing approach to strengthening pediatric oncology care in resource-constrained settings. However, the lack of real-time communication and escalation workflows limits its full clinical impact. Building on these findings, we propose the co-design and pilot implementation of a digital PEWS (e-PEWS) platform that integrates caregiver and nurse assessments with automated, real-time alerts to improve escalation timeliness and reduce inequities in childhood cancer outcomes in LMICs.