Inequalities in paediatric cancer care: A need for Action

15 Dec 2021
Inequalities in paediatric cancer care: A need for Action

By Denis Horgan, PHD, LLM, MSc,

Executive Director, European Alliance for Personalised Medicine

The inequalities in paediatric cancer care around the world are well-documented, but some organisations, rather than merely shrugging their shoulders, are now putting significant efforts into promoting remedies.

The Switzerland-based Botnar Foundation has partnered with the Brussels-based EAPM to bring some focus to the dilemma – and to disseminate information to a broad audience in outreach that may be helpful in easing some of the challenges and in demonstrating some of the pioneering work being done, often under sub-optimal conditions, to develop innovative responses. EAPM has partnered with the UK organisation ecancer in this endeavour.

The problem of inequality is chronic and now has become acute with the strains imposed by COVID-19. The divergences in survival rates remain conspicuously high in the treatment of children and young people with cancer, with an average of 85% achieved in high-income countries compared with 30% in resource-limited settings in low and middle-income countries (LMICs). More than three-quarters of children around the world are living in LMICs, leaving a wide survival gap. 

In Africa there are particular shortages of paediatric oncology facilities, and paediatric facilities frequently lack the resources for accurate diagnosis and treatment of cancer. Even those that can offer treatment reach only half of the probable need, since about 50% of childhood cancer in Africa is undiagnosed.

The chronic underperformance in childhood cancer in the developing world has many causes. Compliance with treatment is often uneven, for reasons that include financial barriers, lack of family support and fear of treatment.

Lack of guidance and of data is another handicap to diagnosis and treatment. And human resource capacity development is at its most acute in LMICs, as is observed in a Zimbabwean study of experience from a low-resource setting in education and training of clinical oncologists (1).

As the study points out, the lack of sufficient numbers of qualified staff has been one of the obstacles in the African continent in developing adequate and modern cancer treatment centres, alongside socio-economic demographics and disparities in overall care.

But since clinical oncology was established in 1990 in a collaboration between the Government of Zimbabwe and the WHO, training through the University of Zimbabwe’s  Master of Medicine in Radiotherapy and Oncology postgraduate programme has yielded more than 20 clinical oncologists. These have initiated cancer treatment facilities in Africa and beyond as a regional resource, training others in the transfer of skills in sub-Saharan Africa.

Collaborations with external partners address deficiencies in training, and also provide support to nationals working abroad to return to teach newer technologies and techniques. This programme has trained professionals who have remained in the continent and have significantly contributed to the expansion of services in their respective countries of practice.

The curriculum continues to evolve from knowledge-based training to competency-based training. But needs continue to grow, and it is now necessary to expand the current infrastructure to keep up with changing technology and new therapies, with an emphasis on sub-specialisation and on aligning the programmes to cater for the dynamic nature of oncology and for local needs.

Lack of guidance and of data was highlighted in a study in Brazil reporting the favourable outcome of a rare case of a recurrent benign melanotic neuroectodermal tumour of infancy (2).

The therapeutic scheme utilised was empirical and distinct from the common treatment for benign tumours, with early administration of adjuvant chemotherapies, but with the surgical procedure remaining the main pillar of treatment.

Although MNTI is fundamentally benign, the tumour may present a locally aggressive behaviour, characterised by a rapid progression and a destructive invasion of adjacent structures, hence causing deformities. Unfortunately, perhaps due to the low incidence of this type of tumour, the published cases in the literature do not characterise the factors that imply the malignant or recurrent behaviour of the disease, nor the therapy to conduct these cases.

Although it is fundamentally benign, the tumour may present a locally aggressive behaviour, characterised by a rapid progression and a destructive invasion of adjacent structures, hence causing deformities.

This case highlights the difficult process of diagnosis and management of an uncommon presentation of MNTI, presenting a favourable outcome despite the recurrent behaviour.  In patients over 5-year old, radiotherapy would be the recommended first choice, as it has been shown to be more effective than chemotherapy. However, due to the risk of sequelae in younger patients in NPMD, the alternative would be chemotherapy.

Even success can have its complications – as the welcome increase in the number of childhood cancer survivors carries with it an associated risk of leaving a greater number at risk of distant complications. A Polish paediatric oncology centre undertook a novel study of the risk of overweight/obesity and abnormal body composition, that revealed differences in incidence among certain populations.

It found patients treated for leukaemia/lymphoma (especially boys) had significantly higher rates of overweight/obesity and higher body fat content compared to the other patient groups, while overweight/obesity was more common in girls among patients treated for solid tumours.  A higher percentage of muscle mass deficiency compared to those in the control group was also noted.

Regression analysis showed time from completion of treatment, gender and type of therapy (radiotherapy, megachemotherapy) were associated with body weight and body composition including fat and muscle content. Whether the disease or the treatment contributes more to the occurrence of obesity after recovery from cancer remains unelucidated, but may adversely affect the quality of life. The study recommended focused efforts to detect and prevent cardiovascular disease among childhood cancer survivors (3). 

In more acute terms, paediatric cancer care has now been particularly disrupted by the COVID-19 pandemic, compounding the divergences, according to a call for collaborative action from leading organisations in the sector (4). The World Health Organization’s 2018 Global Initiative for Childhood Cancer, which aims to achieve at least 60% survival for children with cancer by 2030, is accordingly threatened, they believe. According to Professor Kathy Pritchard-Jones of SIOP, the COVID-19 pandemic "could reverse global life-saving gains in the survival of childhood cancer."

She also stressed the importance of maintaining public awareness of the signs and symptoms of cancer in children and young people, and knowledge of pathways to access diagnosis and treatment. "Late diagnosis of childhood cancer continues to be a problem around the world," she said.

In her view, the biggest threat right now is the reduction in the number of new cases being diagnosed, which implies that children with cancer are not coming forward for medical attention in some countries and will presumably never be diagnosed or may be diagnosed later with more advanced disease that's more difficult to treat.

An audit at a paediatric oncology department in Turkey confirms that significant damage has been inflicted on paediatric cancer care during the COVID-19 pandemic. (The effect of the COVID-19 pandemic on paediatric cancer care: lessons learnt from a major paediatric oncology department in Turkey (5)). Comparisons of daily paediatric cancer patients, diagnostic and treatment procedures before and during the pandemic showed a significant drop in numbers.

There were also fewer in-patients, fewer patients undergoing chemotherapy, radiotherapy, surgery and imaging studies, and a negative trend in the diagnosis of new paediatric cancers.

The study warns that oncology professionals should not only worry for today but also make plans for the post-Coronavirus period, because the pandemic is affecting not only cancer care but also the research and education that condition the future. It urges oncology societies and policymakers to accept the responsibility for working to minimise longer-term negative impacts.

This is not in any way a complete catalogue of the challenges to paediatric cancer care around the globe, nor is it anything other than a snapshot of some of the handicaps and some of the efforts to overcome them. But it does highlight some of the ongoing discrepancies.

Paediatric cancer care in the most prosperous countries in the world faces many challenges but has many advantages in terms of resources, infrastructure and technology. LMICs are facing challenges just as acute, and in many cases amplified by political, social and economic conditions, but has fewer capacities to tackle the problem. It merits attention.


Ndlovu, Ntokozo, et al. "Education and training of clinical oncologists—experience from a low-resource setting in Zimbabwe." ecancermedicalscience 15 (2021).

Pereira, Antonio Augusto Claudio, et al. "The recurrence of the melanotic neuroectodermal tumour of infancy: an unusual presentation of a rare tumour." ecancermedicalscience 14 (2021).

Sawicka-Żukowska, Małgorzata, et al. "Factors affecting weight and body composition in childhood cancer survivors—cross-sectional study." ecancermedicalscience 14 (2021).

Pritchard-Jones, Kathy, et al. "The threat of the COVID-19 pandemic on reversing global life-saving gains in the survival of childhood cancer: a call for collaborative action from SIOP, IPSO, PROS, WCC, CCI, St Jude Global, UICC and WHPCA" ecancermedicalscience 15 (2021).