This study aimed to evaluate the global, regional and national disparities in the quality of care for leukaemia and brain and central nervous system (CNS) tumours among children and adolescents aged 0–19 years. We also assessed temporal trends in the quality of care index (QCI) and explored associations with sociodemographic development levels, gender and age.

The study used data from the Global Burden of Disease (GBD) 2019 database, covering 204 countries and territories. The analysis included global, regional and national levels of care, stratified by sociodemographic index (SDI), gender and age groups.

The study included children and adolescents aged 0–19 years diagnosed with leukaemia or CNS tumours. Data on incidence, prevalence, mortality and disability-adjusted life years (DALYs) were extracted from the GBD 2019 database.

The primary outcome was the QCI, constructed using principal component analysis from four secondary indicators: years of life lost to years lived with disability ratio, DALYs to prevalence ratio, mortality to incidence ratio and prevalence to incidence ratio. Secondary outcomes included temporal trends in QCI, gender disparity ratios (GDRs) and correlations between QCI and SDI levels.

In 2019, leukaemia and CNS tumours accounted for 132 194 deaths globally. The QCI for leukaemia was 74.71, while for CNS tumours, it was 56.59. From 1990 to 2019, the QCI for CNS tumours increased significantly (estimated annual percentage change (EAPC)=1.45, 95% CI: 1.41 to 1.50), whereas the QCI for leukaemia showed a declining trend in middle and low-middle SDI regions (EAPC=−0.13, 95% CI: −0.16 to –0.09). Western Europe had the highest QCI for leukaemia (94.50), while South Asia had the lowest (57.64). Boys had lower QCI scores than girls, and the gender disparity in CNS tumours widened over time (GDR increased from 1.147 in 1990 to 1.160 in 2019). QCI was positively correlated with SDI levels (leukaemia: r=0.591, p<0.001; CNS tumours: r=0.812, p<0.001).

This study highlights significant disparities in the quality of childhood cancer care across regions, development levels and genders. While global QCI for CNS tumours improved, leukaemia care quality declined in middle and low-middle SDI regions. Boys and populations in low SDI regions are particularly vulnerable to poor care. Policymakers should prioritise targeted interventions to address these disparities, improve access to quality care and reduce the global burden of childhood cancer.

The datasets generated and/or analysed during the current study are available in the Global Health Data Exchange (http://ghdx.healthdata.org).

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Childhood cancer represents a significant global health challenge, affecting the lives and health of children and adolescents. Defined by the WHO, childhood cancer encompasses cancers diagnosed between birth and 19 years of age, a period that includes both childhood (0–14 years) and adolescence (15–19 years). This age group is often used in global reports to capture a comprehensive understanding of cancer incidence across childhood and adolescence. Among childhood cancers, leukaemia and brain and central nervous system (CNS) tumours are the most prevalent types.1 Nearly 400 000 children aged 0–19 years develop cancer each year globally,2 and 13.7 million cases will be diagnosed and 11.1 million children will die of childhood cancer in the next 30 years, posing a huge challenge to children’s health and social development.3 In response, WHO launched the global childhood cancer initiative in 2018, aiming to achieve at least 60% survival for childhood cancers worldwide by 2030, thereby saving one million children with cancer over the next decade.4

Large geographic inequality existed across regions and countries regarding the disease burden as well as the prognosis of childhood cancer, and the disparity in childhood cancer care quality was assumed to be the reason behind this. For example, the 5-year survival rate of childhood cancer reached 80% in high-income countries (HICs); however, the survival rate was only 15% to 45% in low- and middle-income countries (LMICs) even though LMICs accounted for 90% of global childhood cancer patients.5 Quality of care is crucial to improve the outcome and reduce disease burden, especially for childhood cancer due to unclear carcinogenesis mechanisms as well as limited prevention measures.

The quality of care index (QCI) has been a widely applied indicator to measure the cancer care quality at the country, regional and global levels, and previous studies have demonstrated that QCI is strongly associated with tumour prognosis and disease burden.6–8 However, the indicators as well as the measurement of quality of care for childhood cancer were limited, and neither had evaluated the disparity in childhood cancer care quality across regions, counties and social development levels.

In this study, we present the development and application of the QCI to measure and evaluate disparities in the quality of childhood cancer care across geographic regions, development levels, genders and age groups. Our findings provide essential insights into the populations most vulnerable to poor care, which is critical for informing targeted interventions in childhood cancer prevention and treatment. By examining these disparities, we aim to contribute to the global initiative and help guide efforts to reduce childhood cancer burden and improve outcomes.

Childhood cancer is a global public health issue, and the WHO has proposed a Global Initiative with the goal of increasing the survival rate of children with cancer globally to at least 60% by 2030 while reducing their suffering and improving their quality of life. In this study, we established a QCI to represent the quality of childhood cancer care, and the results suggested that overall QCI was associated with sociodemographic levels, while the QCI of leukaemia in the middle SDI and low-middle SDI regions showed a decreasing temporal trend, and the gender disparity of QCI for CNS tumours increased over 30 years.

In this study, we focused on two kinds of childhood cancer types, that is, leukaemia and CNS tumour, and quality of cancer care significantly valued in the two. Leukaemia was of the highest burden out of all childhood cancers,13 which has caused 43 193 deaths and 3 544 099.33 DALYs in 2019, taking a proportion of 32.67% and 32.96% out of the total childhood cancer occurring in 0–19 years of age. Leukaemia may appear at all ages, but different subtypes of leukaemia have different prevalence rates at different ages.14 Acute lymphoblastic leukaemia (ALL) is most common in early childhood and is more prevalent in males than in females.15 Acute myeloid leukaemia (AML) is highly prevalent in the elderly population, whereas chronic myeloid leukaemia (CML) and chronic lymphoid leukaemia (CLL) are rare in young children. Many genetic factors have been shown to be associated with an increased risk of ALL, including Down syndrome, germline mutations in PAX5 and ETV6 and polymorphic variants in specific genes.16 Prospective cohort studies based on older adults have found that an increase in leukaemia may also be associated with complications of haematologic malignancies, and increased exposure to radiotherapy and chemotherapy,17 but the extent of their impact on the development of leukaemia in children is unclear. Significantly higher 5-year relative survival rates for ALL and AML in adolescents compared with older patients, reflecting inequalities in access to care between children and older patients, differences in treatment regimens, and more aggressive disease in older leukaemia patients.18 With unclear carcinogenesis of leukaemia disease, early detection of specific symptoms, such as hepatomegaly, splenomegaly, bruising, fever, limb and bone pain, pallor, fatigue and anorexia, and followed by appropriate treatment and high-quality care, is the primary strategy for leukaemia prevention and control. CNS tumours are the second most common childhood malignancy and the most common solid tumour in children, and are the most common cause of death among all childhood cancers. Given the unclear process of CNS tumour development, enhancing the quality of childhood cancer care is the key to improving childhood cancer prognosis as well as to reducing the disease burden, as recorded that regimens for management have been emphasised as key pillars in the WHO global initiative. A recent systematic review by Uwishema et al 19 highlights the significant burden of CNS tumours in Africa, where limited access to diagnostic and treatment facilities exacerbates poor outcomes. While their study focuses on the African context, it underscores the global disparities in CNS tumour care and the urgent need for targeted interventions in low-resource settings to improve outcomes for children and adolescents worldwide.19

In this study, we observed a correlation between the quality of leukaemia and CNS tumour care and social development levels. This observation was similarly reported in the global estimation that high-income regions had higher QCIs than the global average values,9 which could be explained by the country’s capacity to deliver qualified childhood cancer services. The NCD Country Capacity Survey conducted by the WHO showed that over 90% of HICs had the ability to deliver fundamental cancer diagnosis and treatment services including pathology services (laboratories), cancer surgery, chemotherapy and radiotherapy. However, 55% of LMICs reported that none of these services were available.20 This greatly varied service capacity would explain the disparity of childhood cancer QCI across countries in different social development levels. Second, financial expenses were also a barrier against a high QCI, especially in LMICs. Lack of universal health coverage leads to significant inequalities in access to and quality of information on cancer in LMICs, and the capacity for early diagnosis and management of paediatric cancer cases remains limited and often lacks effective investment in childhood cancer patients. In contrast, universal health coverage efforts in HICs have resulted in greater access to early diagnosis and treatment and quality services for more childhood cancer patients.21 22 Meanwhile, factors from the parents’ perspective would also be a barrier against timely, high-quality childhood cancer care.23 The most common reasons for treatment abandonment include poverty, a lack of interest in their own disease, cultural myths, feelings of guilt and/or social discrimination among their peers.

Some studies have shown that the incidence of and deaths from leukaemia have increased globally over the past three decades, with higher incidence and lower mortality rates in regions with higher economic levels, reflecting years of relentless efforts at the prevention, early detection, diagnosis and treatment of haematologic malignancies.24 This study observed an increasing QCI since 1990, while the QCI of leukaemia in the low SDI and low-middle SDI levels significantly decreased. The decreasing QCI trend may be related to the highly increased disease burden of leukaemia in low SDI and low-middle SDI levels and an unproportionate increasing ability to deliver corresponding leukaemia healthcare services in these countries. GBD reported that 37.43% of the incident cases were emerging in low and low-middle countries in 2019, which was 1.31 times higher than the value of 28.53% in 1990. However, the improvement of national ability for leukaemia early detection, treatment and long-term care was limited. For example, in Asia, 5-year survival estimates for LMICs range from 34.3% to 73.1%, compared with 77.1% to 85.0% in HICs.25 26 Early deaths due to infection, haemorrhage and abandonment of treatment are more frequent, with up to 50%–60% of children abandoning treatment in some areas.27 Meanwhile, children with leukaemia needed long-term care, during which a family approach was also valued. However, the related social intervention and support were far from satisfactory in low SDI and low-middle SDI countries. Lutz Goldbeck certified that promoting communication between parents about their coping strategies and about the reactions of their child could improve the goodness of fit of the family’s joint efforts in coping with childhood cancer.28 However, delayed diagnosis, early deaths, abandonment of treatment and increased relapse rates are major challenges for families of leukaemia children patients in low-income countries and disparities in the capacity of health services contribute to the lack of timely access to effective health resources for local children.26 29 Thus, the inconsistency in fasting increases leukaemia burden with limited healthcare service ability and calls for more attention to be paid in low SDI and low-middle SDI regions with a high incidence of leukaemia, especially in the development of a resilient and sustainable health system to deliver timely, affordable and high-quality childhood cancer care to respond to the emerging childhood cancer burden. It also requires us to raise health awareness, increase investment in healthcare, strengthen global partnerships to improve imbalances in socioeconomic development and reduce the burden of disease in LMICs.

The QCI of childhood cancer differed between the sexes. Two observations were identified in this study. First, the QCI for childhood cancer was higher in girls than that in boys. This may be related to the high burden and worse prognosis of childhood cancer in boys than in girls.10 Sex genotype plays a significant role in gender disparity in childhood cancer care. A study by Soon et al showed that all tumours had a higher incidence in boys, regardless of tumour subtype, patient age or region.30 31 It has also been confirmed that the incidence and mortality rates of different subtypes of leukaemia in boys tend to be higher than those in girls in different SDI regions. The incidence of different subtypes of leukaemia is similar in all countries, with the largest gender differences in AML and CLL, and smaller gender differences in ALL, which is generally male-dominated.32 We also need to admit that this observation could be biased if a higher proportion of girls remained undiagnosed of childhood cancer due to boys’ preferential attention in certain cultural backgrounds. To address this issue, it is crucial for policymakers to consider gender as a factor in the design of childhood cancer care programmes, particularly in LMICs, where disparities in care access are often exacerbated by socio-economic and cultural factors. Promoting gender-sensitive healthcare interventions and ensuring equal access to diagnosis, treatment and supportive care for both sexes should be prioritised in national cancer strategies. Additionally, further research is needed to explore the underlying causes of these disparities and develop targeted interventions. Second, the gender disparity of QCI in brain and CNS tumour showed an enlarging temporal trend. Distinguished subtype distribution in girls and boys could explain the increasing gender disparity in QCI. There are more than 100 different histological subtypes of CNS tumours, and the incidence varies according to age and histological subtype.33 34 The WHO’s CNS tumours classification released in 2021 uses extensive data from molecular testing, confirming higher mortality rates for some subtypes.35 Some studies have confirmed the high incidence of malignant CNS tumours in boys and the high incidence of non-malignant tumours in girls, both of which are on an upward trend,36 and brain and CNS tumours are the most common causes of cancer death in boys.36 37 Although the quality of care for girls with CNS tumours is higher than that of boys globally, the GDR value of <1 in the low SDI region suggests that boys receive a higher quality of care than females in this region, whereas the GDR value of close to 1 in the high SDI region suggests that the quality of care received by boys and girls is almost equal, which is in line with the findings of our study (online supplemental table 3).9 However, potential confounders, such as differences in healthcare access, socioeconomic status and regional healthcare policies, may influence these results and should be considered when interpreting the gender disparities in QCI. Other possible explanations should be further explored. Nevertheless, the alarmingly low QCI for brain and CNS tumour in boys should be paid more attention to and deserve further innovation research.

According to previous studies, there are large differences in the quality of care between adult and childhood patients with cancer. Globally, the QCI of paediatric leukaemia patients was lower than that of adult leukaemia patients, and the quality of care of paediatric leukaemia patients in low SDI and low-middle SDI regions was rather higher than that of adult leukaemia patients.10 In addition, a previous study also found that the patients in their early adulthood with CNS tumours have higher QCI. Paediatric patients had better quality of care in the high SDI and high-middle SDI regions, while the QCI for CNS tumours was poor for all ages in the low and low-middle SDI regions, which was consistent with our study. These differences may be due to the different SDI levels and the subtypes of tumours.9

Results of this study will draw public attention to childhood cancer patients and the quality of care, especially focusing on the unmet needs in LMICs and the poorer regions of HICs, with a view to formulating better policies and regulations to enable them to receive better care.

This study has several strengths and advantages. We systematically estimated the quality of care for two common types of childhood cancer at global, regional and national levels. The results of this study could provide essential data on vulnerable populations to better implement the CureAll approach to accomplish the global initiative by increasing access, advancing quality and saving lives. The study also has some limitations. First, our results may be interpreted with caution in some areas due to the limitations of the IHME-GBD dataset in national data registries. These limitations include potential reporting biases, incomplete data and varying standards of data collection across different countries. Second, we did not assess variables such as disease subtypes and ethnicity separately due to data unavailability. Additionally, the completeness of childhood cancer registration may vary across countries, particularly those with differing socioeconomic status. In countries with well-established cancer registries, data is generally more complete, while in low-income or less-developed countries, challenges such as underreporting and limited resources may affect data accuracy and availability. Furthermore, the cross-sectional nature of this study prevents us from drawing causal conclusions about the relationship between quality of care and the various factors considered. These discrepancies and methodological constraints should be considered when interpreting the findings from the GBD dataset.

In summary, we estimated the quality of care for children with leukaemia and CNS tumours. Overall, QCI showed an improving temporal trend, and QCI was positively associated with country-level social development levels, while the QCI of leukaemia in the middle and low-middle SDI regions showed a decreasing trend. Boys had a lower QCI level than girls, and the sex disparity was increasing in CNS tumours. This estimation highlighted the vulnerable regions and populations in accessing high-quality childhood cancer care. Countries with low social development levels and boys should be prioritised in policy interventions to reduce health disparities. To address these issues, policymakers in LMICs should focus on improving access to quality care, particularly for boys and populations in lower SDI regions. Ensuring equitable healthcare policies, increasing access to early diagnosis and enhancing treatment options will be crucial in addressing these disparities. Efforts to implement gender-sensitive approaches and targeted interventions can help bridge the care gaps and ultimately improve survival rates.

The datasets generated and/or analysed during the current study are available in the Global Health Data Exchange (http://ghdx.healthdata.org).

We highly appreciate the research team of the Institute for Health Metrics and Evaluation, University of Washington, for providing publicly available data on global health.