Background
To enhance the quality of care available for children with central nervous system (CNS) tumors across the world, a systematic evaluation of capacity is needed to identify gaps and prioritize interventions. To that end, we created the PediAtric Neuro-Oncology Resource AssessMent Aid (PANORAMA) tool.
Methods
The development of PANORAMA encompassed three phases: operationalization, consensus building, and piloting. PANORAMA aimed to capture the elements of the pediatric neuro-oncology care continuum through domains with weighted assessments reflecting their importance. Responses were ordinally scored to reflect the level of satisfaction. PANORAMA was revised based on feedback at various phases to improve its relevance, usability, and clarity.
Results
The operationalization phase identified 14 domains by using 252 questions. The consensus phase involved 15 experts (6 pediatric oncologists, 3 radiation oncologists, 2 neurosurgeons, 2 radiologists, and 2 pathologists). The consensus phase validated the identified domains, questions, and scoring methodology. The PANORAMA domains included national context, hospital infrastructure, organization and service integration, human resources, financing, laboratory, neurosurgery, diagnostic imaging, pathology, chemotherapy, radiotherapy, supportive care, and patient outcomes. PANORAMA was piloted at 13 institutions in 12 countries, representing diverse patient care contexts. Face validity was assessed by examining the correlation between the estimated score by respondents and calculated PANORAMA scores for each domain (r = 0.67, p <0.0001).
Conclusions
PANORAMA was developed through a systematic, collaborative approach, ensuring its relevance to evaluate core elements of pediatric neuro-oncology service capacity. Distribution of PANORAMA will enable quantitative service evaluations across institutions, facilitating benchmarking and the prioritization of interventions.