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Neoplasias , Niño , Humanos , Adolescente , Adulto Joven , Estudios de Seguimiento , Neoplasias/terapia , SobrevivientesRESUMEN
OBJECTIVE: To describe the clinical pattern of childhood and adolescent cancers across India using hospital-based data in the National Cancer Registry Program. METHODS: Records of 60720 cancer cases in the 0-19 year age group for the period 2012-2019 from 96 hospital-based cancer registries were reviewed. Childhood cancers were classified based on the International Classification of Childhood Cancer (ICCC). Descriptive analysis was used to examine the distribution of cancer by five-year age groups, sex and ICCC diagnostic groups and subgroups. Data were analysed using IBM SPSS software and visualised using R software. RESULTS: 3.2% and 4.6% of all cancer cases in India were among children in the 0-14 year and 0-19 year age groups respectively. The male-to-female ratio for all cancers was 1.72 for 0-14 years and 1.73 for 0-19 years. The four leading groups of cancers among 0-14 year olds were leukemia (40%), lymphoma (12%), central nervous system tumor (11%) and bone cancer (8%). The four leading cancers among the 0-19 year age group were leukemia (36%), lymphoma (12%), bone (11%) and central nervous system tumor (10%). CONCLUSION: Cancers in the 0-14 and 0-19 age groups accounted for a considerable proportion of all cancers with significant male preponderance. Such information helps to fine-tune research and planning strategies.
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Neoplasias del Sistema Nervioso Central , Leucemia , Linfoma , Niño , Adolescente , Femenino , Masculino , Humanos , India/epidemiología , Sistema de Registros , HospitalesRESUMEN
Ramandeep Singh AroraBackground Modern-day treatment of childhood cancer is punctuated by the necessary need for intensive care. This study was performed to understand the intensive care unit (ICU) admission rates and factors associated with ICU admission in a cohort of newly diagnosed childhood cancer patients in India. Materials and Methods All childhood (age <18 years) patients in the hospital-based cancer registry who had registered between March 1, 2013, and May 31, 2018, formed the cohort. ICU admissions were recorded and demographic and clinical factors associated with ICU admission were investigated. ICU admission rates were the primary outcome of interest and secondary outcomes were ICU admission rates for sick/supportive reasons, ICU admission rates for surgical/procedural reasons and mortality during ICU admission. Results In a cohort of 258 children (66% males, 61% from India, and median age 7 years), 149 (58%) patients needed one or more ICU admission (median one with range of one to five) with total 204 ICU admission episodes. While age group, gender, and nationality were not significantly associated with ICU admission, cancer type was (highest in neuroblastoma (82%) and central nervous system (CNS) tumors (71%)). Sick/supportive care ICU admissions were significantly higher in patients of younger age, Indian origin, and certain cancers (leukemias, lymphomas). Surgical/procedural ICU admissions were significantly higher in international patients and certain cancers (CNS tumors, neuroblastomas, and soft tissue sarcomas). There were 17 ICU deaths (11% of patients admitted to ICU) and all but one were from sick/supportive care ICU admissions. Conclusion Our study highlights higher than reported ICU admission rates and lower than reported mortality in children with cancer in low- and middle-income countries. We next plan to develop more specific ICU admission criteria, prospectively evaluating severity metrics in these patients, and explore the development of a high dependency unit.
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Background: Childhood cancers are emerging as an essential concern in India where there is lack of a specific programme component or policy to address childhood cancer control. There is limited information on the status and quality of childhood cancer care services in India. This paper describes the childhood cancer care services available at secondary and tertiary-level hospitals in India through a cross sectional study design. Methods: The survey was conducted in 137 tertiary-level and 92 secondary-level hospitals in 26 states and 4 Union Territories (UTs), ensuring a uniform representation of public and private care hospitals. The study tool collected data on the organisational infrastructure, type of oncology services, health workforce, equipment, treatment and referral protocols, and treatment guidelines. Descriptive statistics was used to primarily present the health service status and data on childhood cancer care services in proportions and mean. Findings: A dedicated pediatric oncology department was available in 41.6% of the public, 48.6% of private, and 64% Non Government Organization (NGO) managed tertiary-level hospitals. In 36 (39%) of the 92 hospitals providing secondary care, childhood cancer care was provided. The availability of bone (41.5%) and positron emission tomography (PET) scans (25.9%) was lower in public tertiary hospitals, whereas histopathology, computerised tomography (CT scan), and magnetic resonance imaging (MRI) were lower in public secondary hospitals than private and NGO managed hospitals for the corresponding level of care. Most tertiary hospitals had the required supportive care facilities except for play therapy and hospice care. Less than 50% of the public tertiary hospitals had stocks of the four categories of cancer-treating drugs and essential infrastructure for radiotherapy and chemotherapy. Most secondary-level hospitals not treating childhood cancer had referral linkages with tertiary hospitals. Interpretation: The situational analysis of childhood cancer care services in India showed the concentration of availability of childhood cancer care services at the tertiary level of health care. There were gaps in the availability of specialised pediatric oncology care in all the tertiary hospitals. The availability of childhood cancer care services was higher in private and NGO-managed hospitals than in public hospitals. Integration of childhood cancer as a part of the national cancer control response should be taken up as a matter of priority. The need of the hour is to formulate a childhood cancer policy that will enable timely access to care universally. Funding: World Health Organization, India provided funding and technical support.
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In Asia, a few countries have a long and established history of collaborative clinical trials successfully formed national children's cancer study groups, but many still do not have such groups. The process of forming national children's cancer groups is fraught with many hurdles, which varies among the countries. One of the basic requirements for running clinical trials is an affordable health care system in which most of the children with cancer can receive the proposed treatment. The health insurance coverage for children with cancer varies from <20% to as high as 100% among Asian countries, and the operation of clinical trials must also be adjusted accordingly. Shortage of research personnel is common, including medical, nursing, research coordinators, and data managers. The establishment of the Asian Pediatric Hematology and Oncology Group aims to provide a good platform for promotion of international clinical trials in the Asian countries.
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Hematología , Neoplasias , Humanos , Niño , Asia/epidemiología , Neoplasias/terapiaRESUMEN
BACKGROUND: The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families. METHODS: This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families. RESULTS: Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families. CONCLUSIONS: Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally.
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COVID-19 , Neoplasias , Humanos , Niño , Pandemias , COVID-19/epidemiología , Neoplasias/epidemiología , Neoplasias/terapia , Comunicación , LenguajeRESUMEN
OBJECTIVE: Using data from a hospital-based cancer registry (HBCR) in the private sector in Northern India, we provide overall survival (OS) and event-free survival (EFS) for childhood cancer patients. METHODS: All newly diagnosed childhood (age <18 years) cancer patients in our HBCR registered between March 1, 2013 till July 31, 2021 were eligible. 3-year and 5-year OS (death was an event), EFSc (death, progression/relapse was an event), and EFSa (death, progression/relapse, abandonment of treatment was an event) were calculated using the Kaplan-Meier method. Regression analysis was done to see their association with demographic, diagnostic and treatment variables. RESULTS: 705 newly diagnosed children (36.2% female) with cancer were registered. Common cancers were leukemias (26%), CNS tumors (20%) and bone tumors (16%). 202 (28.6%) had experienced an event at median follow up of 1.95 years (range 0-8.14 years), which included 23 (3.3%) who abandoned treatment. The 3-year OS, EFSc, EFSa were 70.8%, 64.4% and 63.6%, respectively. Correspondingly, 5-year OS, EFSc, EFSa were 66%, 58.6% and 57.5%, respectively. There was no significant difference by age group, gender, nationality, and if cancer directed treatment initiated elsewhere. The OS, EFSa and EFSc by the main and the extended International Childhood Cancer Classification categories varied significantly (P<0.001). CONCLUSION: We add more recent registry-based OS data on childhood cancer in India and present the first estimates on EFS.
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Neoplasias , Niño , Humanos , Femenino , Adolescente , Masculino , Neoplasias/epidemiología , Neoplasias/terapia , Supervivencia sin Progresión , Estudios Retrospectivos , Hospitales , Sistema de Registros , Recurrencia , Supervivencia sin EnfermedadRESUMEN
PURPOSE: Formal training in clinical research methodologies is limited in limited-resource countries. Through collaboration among high- and middle-resource settings and in response to an identified need verbalized by regional pediatric oncology practitioners, Pediatric Oncology East & Mediterranean Group and St Jude Global developed a workshop focused on capacity building in research skills. Here, we describe its structure, implementation, and early results. METHODS: Leveraging virtual capabilities, the format included lectures and small group breakout exercise sessions, for 3 hours per day on 2 consecutive days per week for 2 consecutive weeks. Topics included basics of study design, introduction to health care statistics, research ethics, data registries, and scientific writing. Applicants were required to submit an abstract for a potential research project. Each breakout group selected one abstract for further development and presented the final version in a groupwide session. The participants' experience was evaluated through an online survey. RESULTS: Attendance included 29 registrants from 12 countries and six disciplines. Each breakout group was assigned a themed category: cohort studies, clinical trials, or registries. Critical feedback from the breakout sessions helped strengthen the selected projects, which included a retrospective study, a prospective observational study, a prospective interventional study, and a registry proposal. After the workshop, participants were invited to further develop their original abstracts, and three proposals received additional mentoring, one of which was a multi-institutional prospective study that was subsequently submitted through the Pediatric Oncology East & Mediterranean Group network for implementation. The postworkshop survey revealed an overall highly positive experience, and feedback provided potential themes for future workshops. CONCLUSION: This workshop demonstrated the potential for collaborative network partnerships in targeting research training gaps in pediatric oncology. Lessons learned will be applied to future workshops to strengthen research in limited-resource settings.
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Oncología Médica , Neoplasias , Niño , Humanos , Estudios Prospectivos , Estudios Retrospectivos , Región Mediterránea , Neoplasias/terapiaRESUMEN
BACKGROUND: To evaluate the treatment cost and cost effectiveness of a risk-stratified therapy to treat pediatric acute lymphoblastic leukemia (ALL) in India. METHODS: The cost of total treatment duration was calculated for a retrospective cohort of ALL children treated at a tertiary care facility. Children were risk stratified into standard (SR), intermediate (IR) and high (HR) for B-cell precursor ALL, and T-ALL. Cost of therapy was obtained from the hospital electronic billing systems and details of outpatient (OP) and inpatient (IP) from electronic medical records. Cost effectiveness was calculated in disability-adjusted life years. RESULTS: One hundred and forty five patients, SR (50), IR (36), HR (39), and T-ALL (20) were analyzed. Median cost of the entire treatment for SR, IR, HR, and T-ALL was found to be $3900, $5500, $7400, and $8700, respectively, with chemotherapy contributing to 25%-35% of total cost. Out-patient costs were significantly lower for SR (p < 0.0001). OP costs were higher than in-patient costs for SR and IR, while in-patient costs were higher in T-ALL. Costs for non-therapy admissions were significantly higher in HR and T-ALL (p < 0.0001), representing over 50% of costs of in-patient therapy. HR and T-ALL also had longer durations of non-therapy admissions. Based on WHO-CHOICE guidelines, the risk-stratified approach was very cost effective for all categories of patients. CONCLUSIONS: Risk-stratified approach to treat childhood ALL is very cost-effective for all categories in our setting. The cost for SR and IR patients is significantly reduced through decreased IP admissions for both, chemotherapy and non-chemotherapy reasons.
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Leucemia-Linfoma Linfoblástico de Células Precursoras , Leucemia-Linfoma Linfoblástico de Células T Precursoras , Niño , Humanos , Estudios Retrospectivos , Leucemia-Linfoma Linfoblástico de Células T Precursoras/tratamiento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Costos de la Atención en SaludAsunto(s)
Neoplasias , Humanos , Niño , Factores Sexuales , Neoplasias/epidemiología , Neoplasias/terapiaRESUMEN
INTRODUCTION: The InPOG-HL-15-01, a multicentric prospective study, used a risk-stratified and response-based approach with doxorubicin, bleomycin, vinblastine, and dacarbazine (ABVD) backbone to treat children and adolescents with newly diagnosed Hodgkin lymphoma (HL) and reduce the use of radiation therapy (RT). Children/adolescents with bulky disease or inadequate response at early response assessment (ERA) after two cycles of chemotherapy were assigned to receive RT. For ERA, positron emission tomography computed tomography (PET-CT) was recommended but not mandatory in view of limited access. This study aimed to compare the impact of using contrast-enhanced computed tomography (CECT) and PET-CT on treatment decisions and outcomes. METHODOLOGY: 396 patients were enrolled and 382 had an ERA at the assigned time point. Satisfactory response was defined as Deauville score 3 or less for patients undergoing PET-CT and complete response (CR)/very good partial response (VGPR) for patients undergoing CECT. Outcomes of interest incorporate 5 year event-free survival (EFS), EFS including abandonment (EFSa), and overall survival (OS). RESULTS: At ERA, satisfactory response was documented in 277 out of 382 (72.5%) participants and this was significantly higher in PET-CT (151 out of 186, 81.2%) as compared with CECT-based assessments (126 out of 196, 64.3%) respectively (p value < .001). Amongst the 203 patients with nonbulky disease (wherein the indication for RT was entirely dependent on ERA), 96 out of 114 (84.2%) and 61 out of 89 (68.5%) patients achieved a satisfactory response according to the PET-CT and CECT (p value = .008) respectively and hence a lesser proportion of patients in the PET-CT arm received RT. Despite a lower usage of RT the 5 year OS of both groups, ERA based on CECT (91.8%) versus PET-CT (94.1%) was comparable (p value = .391) and so was the 5 year EFS (86.7 vs. 85.5%, p value = .724). CONCLUSION: Use of PET-CT as the modality for ERA is more likely to indicate a satisfactory response as compared with CECT and thereby decreases the need for RT in response-based treatment algorithm for HL-afflicted children. The reduction in the application of RT did not impact the overall outcome and plausibly would lower the risk of delayed toxic effects.
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Enfermedad de Hodgkin , Niño , Adolescente , Humanos , Enfermedad de Hodgkin/diagnóstico por imagen , Enfermedad de Hodgkin/tratamiento farmacológico , Enfermedad de Hodgkin/radioterapia , Tomografía Computarizada por Tomografía de Emisión de Positrones/métodos , Dacarbazina/uso terapéutico , Vinblastina/uso terapéutico , Bleomicina/efectos adversos , Doxorrubicina/efectos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Estudios Prospectivos , Países en Desarrollo , Tomografía de Emisión de Positrones , Estadificación de NeoplasiasRESUMEN
OBJECTIVE: To evaluate the proportion of patients who received empirical treatment with antitubercular therapy (ATT) prior to the diagnosis of Hodgkin lymphoma (HL) in the first multicentric, prospective study on HL from India, and to assess its impact on extent of disease at diagnosis and outcomes. METHODS: Children < 18 y with biopsy proven HL were enrolled in InPOG-HL-15-01. Along with other clinical and epidemiological data, history of prior treatment with ATT was documented. All patients received treatment as per a risk-stratified, response-adapted strategy. RESULTS: Out of 396, 115 (29%) children had received ATT prior to establishing a definitive diagnosis of HL. This cohort presented with advanced-stage disease (p = 0.001) and B symptoms (p = 0.001) in a higher proportion of cases. Consequently, those children were more likely to receive 6 rather than 4 cycles of chemotherapy (p = 0.001). They were more likely to have infradiaphragmatic involvement (p = 0.001). Overall survival and event-free survival were not different. CONCLUSION: Empirical treatment with ATT in children presenting with lymphadenopathy continues to be practiced widely in India. The delay in diagnosis may contribute to children presenting with advanced-stage disease warranting more intensive treatment for successful outcomes.
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Enfermedad de Hodgkin , Linfadenopatía , Niño , Humanos , Estudios Prospectivos , Enfermedad de Hodgkin/diagnóstico , Enfermedad de Hodgkin/tratamiento farmacológico , Antituberculosos/uso terapéutico , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Linfadenopatía/tratamiento farmacológicoRESUMEN
To address the wide variation in access to cancer care in India requires strengthening of infrastructure, trained oncology workforce, and minimisation of out-of-pocket expenditures. However, even with major investments, it is unlikely to achieve the same level of infrastructure and expertise across the country. Therefore, a resource stratified approach driven by evidence-based and contextualised clinical guidelines is the need of the hour. The National Cancer Grid has been at the forefront of delivery of standardised cancer care through several of its initiatives, including the resource-stratified guidelines. Development of new guidelines is resource and time intensive, which may not be feasible and can delay the implementation. Adaptation of the existing standard guidelines using the transparent and well-documented methodology with involvement of all stakeholders can be one of the most reasonable pathways. However, the adaptation should be done keeping in mind the context, resource availability, budget impact, investment needed for implementation and acceptability by clinicians, patients, policymakers, and other stakeholders. The present paper provides the framework for systematically developing guidelines through adaptation and contextualisation. The process can be used for other health conditions in resource-constraint settings.
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Neoplasias , Humanos , India , Neoplasias/terapiaRESUMEN
Background: Childhood cancer represents a leading cause of death and disease burden in high income countries (HICs) and low-and-middle income countries (LMICs). It is postulated that the current COVID-19 pandemic has hampered global development of pediatric oncology care programs. This systematic review aimed to comprehensively review the global impact of COVID-19 on childhood cancer clinical outcomes and care delivery. Methods: A systematic search was conducted on PubMed, Embase, Medline, and the African Medical Index from inception to November 3, 2021 following PRISMA guidelines. A manual search was performed to identify additional relevant studies. Articles were selected based on predetermined eligibility criteria. Findings: The majority of studies reported patients with cancer and COVID-19 presenting as asymptomatic (HICs: 33.7%, LMICs: 22.0%) or with primary manifestations of fever (HICs: 36.1%, LMICs: 51.4%) and respiratory symptoms (HICs: 29.6%, LMICs: 11.7%). LMICs also reported a high frequency of patients presenting with cough (23.6%) and gastrointestinal symptoms (10.6%). The majority of patients were generally noted to have a good prognosis; however the crude mortality rate was higher in LMICs when compared to HICs (8.0% vs 1.8%). Moreover, the pandemic has resulted in delays and interruptions to cancer therapies and delays in childhood cancer diagnoses in both HICs and LMICs. However, these findings were disproportionately reported in LMICs, with significant staff shortages, supply chain disruptions, and limited access to cancer therapies for patients. Conclusions: The COVID-19 pandemic has resulted in delays and interruptions to childhood cancer therapies and delays in childhood cancer diagnoses, and disproportionately so within LMICs. This review provides lessons learned for future system-wide disruptions to care, as well as provides key points for moving forward better with care through the remainder of this pandemic. Systematic Review Registration: CRD42021266758, https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=266758.
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Historically, qualitative research has complemented quantitative biologic and epidemiologic studies to provide a more complete understanding of pandemics. The COVID-19 pandemic has generated unique and novel challenges for qualitative researchers, who have embraced creative solutions including virtual focus groups and rapid analyses to continue their work. We present our experience conducting a multilingual global qualitative study of healthcare resilience among teams of pediatric oncology professionals during the COVID-19 pandemic. We provide an in-depth description of our methodology and an analysis of factors we believe contributed to our study's success including our use of technology, engagement of a large multilingual team, global partnerships, and framework-based rapid analysis. We hope these techniques may be useful to qualitative researchers conducting studies during the current pandemic, as well as for all pediatric oncology studies including multiple languages or geographically disparate subjects.
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This multi-centric prospective study (InPOG-HL-15-01) assessed epidemiological, clinical and outcome data of advanced stage Hodgkin Lymphoma (IIB, III and IV) in children and adolescents (N = 262). Chemotherapy regimen was ABVD (doxorubicin, bleomycin, vinblastine, dacarbazine) and radiotherapy (RT) was restricted to patients with bulky disease at diagnosis or with suboptimal response at early response assessment (ERA). ERA revealed complete response in 175 (68.1%), partial response in 77 (29.9%), stable disease in 2 (0.8%), and progressive disease in 3 (1.2%) patients. RT was administered to 111 (97 bulky disease, 14 suboptimal response) patients. Five-year event free (EFS) and overall survival for the whole cohort was 81.1% and 90.8% respectively. On multivariate analysis, the only statistically significant predictor of EFS was use of RT (89% versus 74.2%; p-value <0.001). This study reinforces the benefit of consolidative RT in bulky disease and in those with suboptimal response at ERA on an ABVD backbone.
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Enfermedad de Hodgkin , Adolescente , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Bleomicina/efectos adversos , Niño , Dacarbazina/efectos adversos , Doxorrubicina/efectos adversos , Enfermedad de Hodgkin/diagnóstico , Enfermedad de Hodgkin/tratamiento farmacológico , Humanos , Estadificación de Neoplasias , Estudios Prospectivos , Resultado del Tratamiento , Vinblastina/uso terapéuticoRESUMEN
BACKGROUND: Planning and coordination of the delivery of radiation therapy (RT) can be challenging in resource-limited settings. In this retrospective study, we describe the profile of children undergoing radiation and analyze deviation from some accepted norms. PROCEDURE: Data on all children (<18 years of age) with cancer who completed RT from January 2009 to December 2019 were retrieved. Diagnostic groups with more than five patients were included in the analysis for deviations in RT (time to start [TTS]; total dose delivered [TDD] in gray; and time to complete [TTC]). We investigated reasons for deviation. RESULTS: Two hundred seven children received RT as front-line treatment (68% Indian, 59% male). Most common diagnoses were brain tumors (44%), lymphomas (13%), leukemias, and soft tissue sarcomas (10% each). TTS deviation was seen in 23.6%, TTD in 6.0%, and TTC in 24.7%, while 43.4% had at least one deviation in any of these three parameters. Deviation in TTS varied significantly by location of preceding treatment and by cancer (greatest deviation in sarcomas), with issues around access to health care being the most common reason. Deviation in TTC varied significantly by cancer (greatest deviation in sarcomas and medulloblastoma), with myelotoxicity being the most common reason. CONCLUSIONS: Our study adds to the limited literature on RT quality for children with cancer in resource-limited settings. Certain cancers (sarcomas and medulloblastomas) and patient groups (preceding treatment outside our institute) had the maximum deviation. Barriers to accessing care and myelotoxicity were the two main reasons for this deviation.