In the past decade, an increased global effort has been directed towards improving pediatric oncology status in low and middle-income countries (LMICs). Several international organizations and large consortiums have collaborated to undertake this effort, such as the United States (U.S.) National Cancer Institute (NCI), The Middle East Cancer Consortium, African Cancer Registry Network, The Middle East Childhood Cancer Alliance, Pediatric Oncology East and Mediterranean (POEM) Group and others. However, underreporting of incidence, mortality, and survival rate of childhood cancer in LMICs have so far limited the global community from understanding the true scale of the problem. Underestimating the extent of pediatric cancer in LMICs creates a massive challenge and plays a significant role in delaying improvement of pediatric cancer medical care.
In this study, a rapid review and data assessment from publicly available databases and literature was performed to define the status of pediatric cancer data in low-income countries (LICs) and compare it to that of high-income countries (HICs). This assessment revealed that the amount of pediatric cancer data published in HICs was significantly larger compared to LICs, especially for African countries. The analysis also highlighted the existence of a significant discrepancy of pediatric cancer data reported by different sources in LICs, whereas there was a minimal discrepancy in data reported in HICs.
To better understand the extent of data underreporting in LICs, a questionnaire was sent to cancer registries in selected African countries to assess the factors that might impact the process and quality of data collection and reporting. The results of the questionnaire highlighted that limited resources of registries, staff workload, lack of training, access to diagnostic tools and underrepresentation of their data in global databases were some of the factors that mostly contributed to pediatric cancer data underreporting. Results also indicated that incidence rates reported by cancer registries were not comparable with those reported by global databases, thus confirming the discrepancy outlined in the data assessment.
To further investigate underreporting in LICs and collect pediatric data directly from cancer centers, a fieldwork trip in Egypt took place in 2018. The outcome of interviews and meetings during the visit illustrated that lack of resources, access to therapies, and access to diagnostic tools and protocols were key gaps and challenges that those cancer centers faced. Moreover, future collaborations and action plans were established, and data digitalization and training programs were the main two action plans prioritized.
In summary, the combined outcome of the rapid review and data assessment, cancer registries questionnaire, and field trip suggested that there is a significant underreporting of pediatric cancer data and discrepancy in data reported in LICs. Additionally, cancer hospitals, centers, and registries face tremendous challenges and gaps that negatively impact data collection and reporting. Therefore, there is an urgent need for the global community to establish strategies to quantify the true scale of pediatric cancer, which should lead to allocate sufficient funds to improve pediatric cancer medical care in LICs
