Diagnostic and health system constraints in pediatric hematologic malignancies in East Africa and implications for WHO classification reconsidering in limited resource settings

PURPOSE OF THE REVIEW: Pediatric hematologic malignancies, particularly leukemia and lymphoma, represent a major and growing contributor to childhood cancer mortality in low- and middle-income countries (LMICs). In sub-Saharan Africa, more than 100,000 children develop cancer annually, with survival rates estimated at 20-30%, compared with over 80% in high-income countries, largely due to delayed diagnosis and limited access to specialized care. This narrative and conceptual review, informed by prior empirical work conducted in Kenya and Uganda, examines challenges in implementing World Health Organization (WHO) hematologic malignancy classification frameworks in pediatric care settings in East Africa. Specifically, our research has revealed that cancer classification in this region, beyond the conventional binary of benign versus malignant status for the relevant clinical sample, in many instances requires relatively high-cost technologies that are not available and/or not affordable for non-affluent patients, thus precluding definitive WHO classification of many hematolymphoid malignancies. From our perspective, the significant challenges to applying the verbatim WHO classification in LMICs, for both hematolymphoid and non-hematolymphoid malignancies, underscores the immediate need for an alternative, somewhat simpler classification system designed to evolve in its complexity as increasing resources for both diagnosing and treating cancer reach in LMICs. PRIOR FINDINGS: Although approximately 85% of African countries are geographically located within the sub-Saharan region, cancer fatality rates continue to rise, particularly in LMICs. In addition to cancer, populations in these regions are burdened by high prevalence rates of human immunodeficiency virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS) and various chronic diseases. Our earlier research, conducted at Kenya's Moi Teaching and Referral Hospital and Uganda's Ministry of Health National Laboratory Diagnostic Services, revealed a significant number of pediatric patients suffering from hematological conditions, most notably leukemia and lymphoma. Despite presenting with clear signs and symptoms of these malignancies, many children lacked access to affordable and reliable diagnostic screening tools. As a result, children with presumptive cases of cancer often faced considerable barriers, including long-distance travel and costly diagnostic procedures such as flow cytometry and immunohistochemistry. These tests are not covered by the region's National Health Insurance Fund (NHIF), placing additional financial strain on families. Compounding these challenges are systemic issues such as limited staffing, supply shortages, and outdated diagnostic equipment lacking technical support. Collectively, these factors contribute to delayed or ineffective treatment and ultimately lower patient survival rates. In sub-Saharan Africa, rising cancer mortality occurs in the context of overlapping health-system challenges, including a high burden of infectious diseases such as HIV/AIDS alongside growing rates of noncommunicable diseases. Although Africa represents a smaller share of the global cancer burden, limitations in diagnostic capacity and cancer surveillance contribute to under recognition of many malignancies, particularly pediatric hematologic diseases. In our previous work at Moi Teaching and Referral Hospital in Kenya and within Uganda's Ministry of Health National Laboratory Diagnostic Services, we observed a substantial number of children presenting with suspected leukemia and lymphoma. Many of these patients exhibited advanced clinical features at presentation but lacked access to essential diagnostic tests necessary for accurate classification and risk stratification. Flow cytometry and immunohistochemistry were frequently unavailable or unaffordable, requiring long-distance travel and imposing significant financial strain on families. Additional barriers-including shortages of trained laboratory personnel, limited technical support, supply chain interruptions, and aging diagnostic equipment-further hindered timely diagnosis and appropriate disease classification. These findings underscore the gap between existing WHO classification frameworks and their practical implementation in pediatric care settings in East Africa. The primary challenge in pediatric hematologic malignancy care in East Africa is not the conceptual adequacy of WHO classification systems, but much rather the need for a more accessible and adaptable classification framework that evolves with diagnostic capacity, particularly in LMICs where such resources are limited. Investing in strengthened diagnostic capabilities and clinical resources are essential for achieving equitable implementation, especially with leukemia and lymphoma testing within such areas. Sustained investments of this nature are needed to combat disparities and improve pediatric cancer outcomes in disease classification and tailored therapies.

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Journal
Discover Oncology
Published
2026-06-09
DOI
https://doi.org/10.1007/s12672-026-05336-y
Primary Topic
Acute Lymphoblastic Leukemia research
Type
article
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article

Diagnostic and health system constraints in pediatric hematologic malignancies in East Africa and implications for WHO classification reconsidering in limited resource settings

L. C. Montgomery, Nicholas Kigen, Terry Vik, Steven Kussick et al.
Discover Oncology
Acute Lymphoblastic Leukemia research
article

Diagnostic and health system constraints in pediatric hematologic malignancies in East Africa and implications for WHO classification reconsidering in limited resource settings

L. C. Montgomery, Nicholas Kigen, Terry Vik, Steven Kussick, Teresa Lotodo, Samuel Boova, Tyler Severance, Eda Holl
article en

Abstract

PURPOSE OF THE REVIEW: Pediatric hematologic malignancies, particularly leukemia and lymphoma, represent a major and growing contributor to childhood cancer mortality in low- and middle-income countries (LMICs). In sub-Saharan Africa, more than 100,000 children develop cancer annually, with survival rates estimated at 20-30%, compared with over 80% in high-income countries, largely due to delayed diagnosis and limited access to specialized care. This narrative and conceptual review, informed by prior empirical work conducted in Kenya and Uganda, examines challenges in implementing World Health Organization (WHO) hematologic malignancy classification frameworks in pediatric care settings in East Africa. Specifically, our research has revealed that cancer classification in this region, beyond the conventional binary of benign versus malignant status for the relevant clinical sample, in many instances requires relatively high-cost technologies that are not available and/or not affordable for non-affluent patients, thus precluding definitive WHO classification of many hematolymphoid malignancies. From our perspective, the significant challenges to applying the verbatim WHO classification in LMICs, for both hematolymphoid and non-hematolymphoid malignancies, underscores the immediate need for an alternative, somewhat simpler classification system designed to evolve in its complexity as increasing resources for both diagnosing and treating cancer reach in LMICs. PRIOR FINDINGS: Although approximately 85% of African countries are geographically located within the sub-Saharan region, cancer fatality rates continue to rise, particularly in LMICs. In addition to cancer, populations in these regions are burdened by high prevalence rates of human immunodeficiency virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS) and various chronic diseases. Our earlier research, conducted at Kenya's Moi Teaching and Referral Hospital and Uganda's Ministry of Health National Laboratory Diagnostic Services, revealed a significant number of pediatric patients suffering from hematological conditions, most notably leukemia and lymphoma. Despite presenting with clear signs and symptoms of these malignancies, many children lacked access to affordable and reliable diagnostic screening tools. As a result, children with presumptive cases of cancer often faced considerable barriers, including long-distance travel and costly diagnostic procedures such as flow cytometry and immunohistochemistry. These tests are not covered by the region's National Health Insurance Fund (NHIF), placing additional financial strain on families. Compounding these challenges are systemic issues such as limited staffing, supply shortages, and outdated diagnostic equipment lacking technical support. Collectively, these factors contribute to delayed or ineffective treatment and ultimately lower patient survival rates. In sub-Saharan Africa, rising cancer mortality occurs in the context of overlapping health-system challenges, including a high burden of infectious diseases such as HIV/AIDS alongside growing rates of noncommunicable diseases. Although Africa represents a smaller share of the global cancer burden, limitations in diagnostic capacity and cancer surveillance contribute to under recognition of many malignancies, particularly pediatric hematologic diseases. In our previous work at Moi Teaching and Referral Hospital in Kenya and within Uganda's Ministry of Health National Laboratory Diagnostic Services, we observed a substantial number of children presenting with suspected leukemia and lymphoma. Many of these patients exhibited advanced clinical features at presentation but lacked access to essential diagnostic tests necessary for accurate classification and risk stratification. Flow cytometry and immunohistochemistry were frequently unavailable or unaffordable, requiring long-distance travel and imposing significant financial strain on families. Additional barriers-including shortages of trained laboratory personnel, limited technical support, supply chain interruptions, and aging diagnostic equipment-further hindered timely diagnosis and appropriate disease classification. These findings underscore the gap between existing WHO classification frameworks and their practical implementation in pediatric care settings in East Africa. The primary challenge in pediatric hematologic malignancy care in East Africa is not the conceptual adequacy of WHO classification systems, but much rather the need for a more accessible and adaptable classification framework that evolves with diagnostic capacity, particularly in LMICs where such resources are limited. Investing in strengthened diagnostic capabilities and clinical resources are essential for achieving equitable implementation, especially with leukemia and lymphoma testing within such areas. Sustained investments of this nature are needed to combat disparities and improve pediatric cancer outcomes in disease classification and tailored therapies.

Discover Oncology
King's Fund (GB), Moi University (KE), Beckman Coulter Foundation (US), Indiana University – Purdue University Indianapolis (US), University of Missouri (US)
Openalex Percentile: Top 6%
Acute Lymphoblastic Leukemia research
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