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Development and Pilot Testing of PrOFILE-ST: A Pediatric Surgical Oncology Capacity and Quality Assessment Tool for
Fernanda Kelly Marques de Souza1, Simone de Campos Vieira Abib1, Rodrigo Chaves Ribeiro2
1Department of Pediatric Surgery, Pediatric Oncology Institute - GRAACC - Federal University of São Paulo, São Paulo, Brazil.
Background:
The global incidence of childhood cancer is rising, with nearly 90% of cases occurring in low- and middle-income countries (LMICs), where mortality remains high due to limited access to quality pediatric surgical care. To address this, the International Society of Pediatric Surgical Oncology (IPSO) and St. Jude Children's Research Hospital developed the Pediatric Oncology Facility Integrated Local Evaluation Surgical Tool (PrOFILE-ST) to assess surgical capacity and quality in resource-limited settings.
Methods:
PrOFILE-ST was developed in three stages: construction, content validation, and pilot testing. The tool was refined over three years through biweekly team meetings and expert feedback. Pilot testing took place at six institutions across five countries (Sudan, Zambia, Peru, Mexico, Brazil), collecting both quantitative and qualitative data on surgical practices. Data was analyzed using descriptive statistics, producing reports to guide quality improvement.
Results:
The final tool consists of 12 modules and 273 questions. Pilot testing revealed differences in surgical capacity between upper-middle-income countries (UMICs) and lower middle/low-income countries (LMICs/LICs). UMICs had better infrastructure, while LMICs/LICs excelled in surgical reporting and timeliness. Improvement priorities included the development of pediatric surgical oncology fellowships, standardization of operative reporting, systematic morbidity and mortality analysis, and establishment of real-time multidisciplinary team discussions.
Conclusions:
PrOFILE-ST is an effective tool for assessing pediatric oncology surgery across diverse settings, highlighting strengths and areas for improvement. It can guide quality improvement efforts to address global disparities in childhood cancer outcomes.
