Underdiagnosis and delayed access to adequate childhood cancer care lead to enormous disparities in outcomes globally. Coordinated efforts are required to close this gap.
Underdiagnosis and delayed access to adequate childhood cancer care lead to enormous disparities in outcomes globally. Credit: GAVI/2013/Karel Prinsloo
Globally, cancer is one of the most common causes of childhood mortality. This burden is mainly felt in low- and middle-income countries (LMICs) as the majority of children with cancer live in these regions (80%). Survival rates in high-income countries (HICs) are around 80%, compared to 20% in LMICs.
To bridge this huge disparity, the World Health Organization (WHO) launched the Global Initiative for Childhood Cancer in 2018. This initiative aims to emphasise strategies for countries to achieve 60% survival rates of the six most common and most curable types of cancer: acute lymphoblastic leukaemia, Burkitt lymphoma, Hodgkin lymphoma, retinoblastoma, nephroblastoma, and low-grade glioma.
Despite ongoing efforts, it is a challenge to achieve the 60% survival rate goal. The main causes of low cancer survival rates in LMICs are underdiagnosis and delayed access to adequate childhood cancer care, including diagnostics and treatment modalities such as chemotherapy. As a result, children either never present for treatment or they present late, with advanced stages of cancer leading to a poor prognosis.
Underdiagnosis is defined as the failure to recognise or correctly diagnose a disease or condition. Estimates of underdiagnosis range from 10–50% and could be even higher depending on individual countries. Estimates are based on prevalences of different types of childhood cancer that are hypothesised to be the same worldwide.
The most known exception to this is the prevalence of the endemic Burkitt lymphoma, which is associated with malaria and HIV. The estimated prevalence of Burkitt lymphoma is therefore higher in sub-Saharan Africa compared to western Europe.
Delayed access to childhood cancer care can be measured by assessing the time between the onset of symptoms, the diagnosis, and the initiation of treatment. These delays range up to 200 days in sub-Saharan Africa.
Disparities in access to childhood cancer care
An inadequately skilled workforce and inadequate health system infrastructure across all disciplines of paediatrics in LMICs are the main reasons for underdiagnosis and delayed access to care.
This causes huge disparities in paediatric oncology care and outcomes globally. These disparities can be influenced by a number of factors, including the healthcare provider’s ability to diagnose and the patient’s ability to reach a health facility. In addition, many LMICs fail to offer health insurance coverage for childhood cancer care.
Parents in some LMICs may also prefer to seek traditional or alternative medical care. However, even when they reach conventional healthcare, healthcare workers often struggle to identify the symptoms as signs of cancer. Childhood cancer can easily mimic other more common diseases, and healthcare workers are often unaware of the prevalence of childhood cancer. For example, symptoms of malaria can be very similar to those of leukaemia.
Poorly organised health system delays diagnosis in Romania
Romania is classified by the World Bank as a HIC. However, due to economic instability, the health system remains poorly organised. A direct effect is seen in the capacity of diagnostics and treatment for children with cancer. Such challenges can have detrimental effects on the long-term prognosis, including the quality of life of patients and their respective families. In Romania there are a total of 11 facilities offering comprehensive childhood cancer care.
In Bucharest, a four-year-old boy presented to the Marie Curie Hospital with a large abdominal tumour, initially suspected to be a kidney tumour. Upon review, the medical team recommended a biopsy for clarity on the diagnosis. Unfortunately, lack of access to essential diagnostic tools such as immunohistochemistry, genetics, MIBG scintigraphy, and PET-CT scans delayed the diagnosis of neuroblastoma by six weeks.
During this period, the boy’s condition deteriorated. After another month of waiting, his parents decided to investigate and seek treatment in another country. This diagnostic delay was a crucial factor in the boy’s prognosis.
In Romania there are a total of 11 facilities offering comprehensive childhood cancer care. Credit: Jan Vozenilek.
Traditional medicine compromises diagnosis in Kenya
Kenya is classified by the World Bank as an LMIC. Comprehensive childhood cancer care is offered in two tertiary care hospitals: Moi Teaching and Referral Hospital in Eldoret and Kenyatta National Hospital in Nairobi.
A 13-year-old boy from Bungoma County developed swelling in his neck with fever and loss of appetite. His symptoms immediately prompted his parents to seek care that same day in a nearby small private clinic. The boy was referred to a bigger hospital for further investigation and treated for an infection.
However, the boy’s father then abstained from seeking subsequent care and the family’s community advised they turn to traditional medicine, which is a common practice in eastern Africa. Eventually, when the boy’s condition did not improve after months, Hodgkin lymphoma was diagnosed through biopsy at the referral hospital. He began treatment three days later.
How to bridge the gap?
In the Romanian case study, addressing the existing disparities in childhood cancer care requires several key actions. One important step is offering opportunities for medical professionals—doctors, nurses, and social workers—to participate in fellowships or observership at more advanced oncology centers in the region. Exposure and education are key to enhancing skills and knowledge, contributing to improved childhood cancer care. Additionally, EU grants play a critical role in implementing these changes, ensuring that the necessary resources are in place to bridge the gaps in treatment and care.
The Kenyan case study highlights how alternative beliefs and perceptions about childhood cancer can significantly delay access to care. Raising awareness of childhood cancer among communities and healthcare providers can greatly improve access to care. In Kenya, where childhood cancer treatment is available and covered by the national health insurance system, efforts should focus on delayed access to care and reduction of underdiagnosis.
Training healthcare providers in primary and secondary care hospitals, and ensuring they are well-connected with referral centers, will enhance their ability to recognise early signs and symptoms and refer patients appropriately. Educating communities and community healthcare workers about childhood cancer symptoms presents a challenge, as deeply ingrained beliefs can be difficult to change. However, radio campaigns and posters can effectively raise awareness of early warning signs and encourage parents to seek conventional medical care promptly. These efforts should be part of a national cancer program.
In conclusion, outcomes for children with cancer worldwide differ enormously depending on access to adequate childhood cancer diagnostics and, eventually, care. In order to bridge this gap we need global, regional, and national efforts to prioritise childhood cancer in the global health agenda of the 21st century. National cancer strategies should include childhood cancer and focus on access to care and diagnostics in addition to treatment. Without access and an accurate diagnosis, treatment will be delayed, which directly is related to inferior outcomes.
The opinions expressed are those of the authors and do not necessarily reflect the position of Re:solve Global Health.
Larissa Klootwijk coordinates the awareness and early referral project in Kenya for Team Outreach at the Princess Máxima Center for Paediatric Oncology. She holds degrees in medicine from the University of Amsterdam and completed specialised training in Global Health and Tropical Medicine in 2022. Her extensive clinical practice includes projects and research in Sierra Leone, Kenya, and other regions, contributing significantly to the field of global health and oncology.
Laura Stefanescu was born and raised in Romania. She studied medicine at the University of Medicine and Pharmacy Carol Davila in Bucharest and completed residencies in general paediatrics and paediatric oncology. In the last four years she worked in the oncology department of Marie Curie Children’s Emergency Hospital in Bucharest. She is now working in the Princess Máxima Center specialising in leukaemia and lymphoma.
Renske Karens is a registered nurse and chief nursing innovation officer at the Princess Máxima Center, with a background in leading nursing innovation programs and spearheading advancements in paediatric oncological care. She is involved in various partnerships in Europe and very passionately in sharing knowledge and implementation of nursing development strategies with a global perspective.
Minke Huibers is a paediatric oncologist fellow currently coordinating three programs between the Princess Máxima Center for Pediatric Oncology and paediatric oncology departments in Kenya, Tanzania, and Suriname. She completed a PhD in HIV care in Africa and worked for several years in the paediatric oncology department at Kamuzu Central Hospital, Lilongwe, Malawi. She oversees several projects for paediatric oncology programs in LMIC’s and her research focuses on improving diagnostics and care for children with cancer in LMICs.
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