The COVID-19 pandemic poses an unprecedented health crisis in all socio-economic regions across t... more The COVID-19 pandemic poses an unprecedented health crisis in all socio-economic regions across the globe. While the pandemic has had a profound impact on access to and delivery of health care by all services, it has been particularly disruptive for the care of patients with life-threatening noncommunicable diseases (NCDs) such as the treatment of children and young people with cancer. The reduction in child mortality from preventable causes over the last 50 years has seen childhood cancer emerge as a major unmet health care need. Whilst survival rates of 85% have been achieved in high income countries, this has not yet been translated into similar outcomes for children with cancer in resource-limited settings where survival averages 30%. Launched in 2018, by the World Health Organization (WHO), the Global Initiative for Childhood Cancer (GICC) is a pivotal effort by the international community to achieve at least 60% survival for children with cancer by 2030. The WHO GICC is alread...
PURPOSE In 2012, the French African Pediatric Oncology Group established the African School of Pe... more PURPOSE In 2012, the French African Pediatric Oncology Group established the African School of Pediatric Oncology (EAOP), a training program supported by the Sanofi Espoir Foundation’s My Child Matters program. As part of the EAOP, the pediatric oncology training diploma is a 1-year intensive training program. We present this training and certification program as a model for subspecialty training for low- and middle-income countries. METHODS A 14-member committee of multidisciplinary experts finalized a curriculum patterned on the French model Diplôme Inter-Universitaire d’Oncologie Pédiatrique. The program trained per year 15 to 25 physician participants committed to returning to their home country to work at their parent institutions. Training included didactic lectures, both in person and online; an onsite practicum; and a research project. Evaluation included participant evaluation and feedback on the effectiveness and quality of training. RESULTS The first cohort began in Octob...
Each year ~429,000 children and adolescents aged 0 to 19 years are expected to develop cancer. Fi... more Each year ~429,000 children and adolescents aged 0 to 19 years are expected to develop cancer. Five-year survival rates exceed 80% for the 45,000 children with cancer in high-income countries (HICs) but are less than 30% for the 384,000 children in lower-middle-income countries (LMICs). Improved survival rates in HICs have been achieved through multidisciplinary care and research, with treatment regimens using mostly generic medicines and optimized risk stratification. Children’s outcomes in LMICs can be improved through global collaborative partnerships that help local leaders adapt effective treatments to local resources and clinical needs, as well as address common problems such as delayed diagnosis and treatment abandonment. Together, these approaches may bring within reach the global survival target recently set by the World Health Organization: 60% survival for all children with cancer by 2030.
SummaryIn high‐income countries, more than 90% of children with mature B‐cell lymphomas are cured... more SummaryIn high‐income countries, more than 90% of children with mature B‐cell lymphomas are cured with frontline therapy. However, cure requires prompt and correct diagnosis, careful risk stratification, very intense chemotherapy and meticulous supportive care, together with logistical support for patients who live far from the cancer centre or face financial barriers to receiving care. In low‐ and middle‐income countries (LMIC), cure rates range from 20% to 70% because of lack of diagnosis, misdiagnosis, abandonment of treatment, toxic death and excess relapse with reduced‐intensity regimens. Fortunately, a wide range of successful interventions in LMIC have reduced these causes of avoidable treatment failure. Public awareness campaigns have led to societal awareness of childhood cancer; telepathology has improved diagnosis, even in remote areas; subsidized chemotherapy, transportation, housing and food have reduced abandonment; and hand hygiene, nurse training programmes and healt...
This article may be used for non-commercial purposes in accordance with Wiley Terms and Condition... more This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
Pediatric radiotherapy is a critical part of pediatric oncology protocols and the quality of the ... more Pediatric radiotherapy is a critical part of pediatric oncology protocols and the quality of the radiotherapy may determine the future quality of life for long-term survivors. Multidisciplinary team decision making provides the basis for high-quality care. However, delivery of high-quality radiotherapy is dependent on resources. This article provides guidelines for delivery of good quality radiation therapy in resource-limited countries based on rational procurement and maintenance planning, protocol development, three-dimensional planning, quality assurance, and adequate staff numbers and training.
Treatment refusal and abandonment are major causes of treatment failure for children with cancer ... more Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integra...
The utilization of adapted regimens for the treatment of pediatric malignancies has greatly impro... more The utilization of adapted regimens for the treatment of pediatric malignancies has greatly improved clinical outcomes for children receiving treatment in low- and middle-income countries (LMIC). Nutritional depletion has been associated with poorer outcomes, increased abandonment of therapy, and treatment-related toxicities. Surveys have found that nutritional intervention is not incorporated routinely into supportive care regimens. Establishing nutritional programs based upon institutional resources may facilitate the incorporation of nutritional therapy into clinical care in a way that is feasible in all settings. We present a framework for establishing and monitoring of nutritional care based on the infrastructure of institutions in LMIC.
Population-based cancer registries (PBCRs) generate estimates of incidence and survival that are ... more Population-based cancer registries (PBCRs) generate estimates of incidence and survival that are essential for cancer surveillance, research, and cancer control strategies. Though cancer stage data allow meaningful assessments of changes in cancer incidence and outcomes, stage is not collected by most PBCRs. The principal method of staging adult cancers is the tumor, node, metastasis (TNM) classification. Paediatric cancer staging criteria vary by diagnosis, have evolved over time, and sometimes vary by cooperative trial group. Consistency in collection of staging data has therefore been challenging for PBCRs. We assembled key experts and stakeholders (oncologists, cancer registrars, epidemiologists) and utilized a modified-Delphi approach to establish principles guiding paediatric cancer stage collection. Using these principles, recommendations were made on which staging systems should be adopted by PBCRs for the major childhood cancers, including adaptations for low-income countries. Wide adoption of these Toronto Guidelines among registries will facilitate international comparative incidence and outcome studies.
Although morbidity from childhood cancer is second only to unintentional injuries in highincome c... more Although morbidity from childhood cancer is second only to unintentional injuries in highincome countries, in low-income countries, it hardly hits the radar screen compared with death from pneumonia, diarrhea, malaria, neonatal sepsis, preterm birth, and neonatal asphyxia. Nevertheless, the extraordinary progress made in treating childhood cancer in high-income countries brings into harsh focus the mammoth disparities that exist in impoverished areas of the world. As the capacity to diagnose and treat childhood cancer improves in low-and middle-income countries, the ability to improve outcomes for the more common diseases benefits as well. The authors have summarized the issues related to childhood cancer care with thoughtful attention to how children everywhere can gain from the advances in medical science in high-income nations.
The reader should understand the pathophysiology of tumor lysis syndrome and ■ apply this underst... more The reader should understand the pathophysiology of tumor lysis syndrome and ■ apply this understanding to identify the metabolic derangements and malignancies most commonly associated with the condition. The reader should be able to describe the treatment of tumor lysis syndrome ■ including the use of rasburicase. The reader should be able to list the malignancies commonly associated with the ■ superior mediastinal syndrome and possess a clear understanding of the risk of a mediastinal mass for life-threatening airway occlusion or vascular compression particularly in the setting of sedation or anesthesia. Moreover, mediastinal masses represent another potentially life-threatening condition with high risk for airway occlusion and vascular compression. In addition to describing the diagnoses that commonly present with a mediastinal mass, the risks associated with sedation and anesthesia in this condition, as well as the importance of balancing these risks with the need for a defi nitive diagnosis, will be emphasized.
Survival rates among children with leukaemia in low-income countries are lower than those in high... more Survival rates among children with leukaemia in low-income countries are lower than those in high-income countries. This has been attributed in part to higher treatment-related mortality (TRM). We examined the demographics, treatment, and outcomes of paediatric patients in El Salvador with acute lymphoblastic leukaemia (ALL) or acute myeloid leukaemia (AML) to determine the incidence, causes, and risk factors for TRM. Two trained data managers collected data prospectively; no patients were excluded. Biological, socioeconomic and nutritional predictors were examined. A total of 469 patients with ALL and 78 patients with AML were included. The 2-year cumulative incidence of TRM was significantly higher among children with AML (35.4 ± 6.4%) than those with ALL (12.5±1.7%; Po0.0001). However, the proportion of deaths attributable to the toxicity of treatment did not differ significantly between AML (25/47, 53.2%) and ALL (55/107, 51.4%; P ¼ 0.98). Among children with ALL, low monthly income (P ¼ 0.04) and low parental education (P ¼ 0.02) significantly increased the risk of TRM. Among children with AML, biological, socioeconomic, and nutritional variables were not associated with TRM. In this low-income country, toxic death significantly contributes to mortality in both ALL and AML. A better understanding of the effect of socioeconomic status on TRM may suggest specific strategies for patients with ALL.
The Policy Forum allows health policy makers around the world to discuss challenges and opportuni... more The Policy Forum allows health policy makers around the world to discuss challenges and opportunities for improving health care in their societies.
Background: The majority of young people in need of palliative care live in low-and middle-income... more Background: The majority of young people in need of palliative care live in low-and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care services available to young people with life-limiting conditions in low-and middle-income countries and assessed core elements with respect to availability, gaps, and under-reported aspects. Methods: PubMed, CINAHL, EMBASE (1980-2013), and secondary bibliographies were searched for publications that included patients younger than 25 years with life-limiting conditions and described palliative care programs in low-and middle-income countries. A data extraction checklist considered 15 items across seven domains: access, education/capacity building, health system support, pain management, symptom management, end-of-life care, and bereavement. Data were aggregated by program and country. Results: Of 1572 records, 238 met criteria for full-text review; 34 qualified for inclusion, representing 30 programs in 21 countries. The median checklist score was 7 (range, 1-14) of 10 reported (range, 3-14). The most pervasive gaps were in national health system support (unavailable in 7 of 17 countries with programs reporting), specialized education (unavailable in 7 of 19 countries with programs reporting), and comprehensive opioid access (unavailable in 14 of 21 countries with programs reporting). Underreported elements included specified practices for pain management and end-of-life support. Conclusion: Comprehensive pediatric palliative care provision is possible even in markedly impoverished settings. Improved national health system support, specialized training and opioid access are key targets for research and advocacy. Application of a checklist methodology can promote awareness of gaps to guide program evaluation, reporting, and strengthening.
Background. Little is known about childhood ALL in the Middle East. This study was undertaken by ... more Background. Little is known about childhood ALL in the Middle East. This study was undertaken by MECCA as initial efforts in collaborative data collection to provide clinical and demographic information on children with ALL in the Middle East. Procedure. Clinical and laboratory data for patients with ALL between January 2008 and April 2012 were prospectively collected from institutions in 14 Middle East countries and entered into a custom-built-database during induction phase. All laboratory studies including cytogenetics were done at local institutions. Results. The 1,171 voluntarily enrolled patients had a mean age of 6.1 AE 3.9 years and 59.2% were boys. TALL represented 14.8% and 84.2% had B-precursor ALL. At diagnosis, 5.6% had CNS disease. The distribution of common genetic abnormalities reflected a similar percentage of hyperdiploidy (25.6%), but a lower percentage of ETV6-RUNX1 translocation (14.7%) compared to large series reported from Western populations. By clinical criteria, 47.1% were low/standard risk, 16.9% were intermediate risk, and 36% were high risk. Most patients received all their care at the same unit (96.9%). Patients had excellent induction response to chemotherapy with an overall complete remission rate of 96%. Induction toxicities were acceptable. Conclusions. This first collaborative study has established a process for prospective data collection and future multinational collaborative research in the Middle East. Despite the limitations of an incomplete population-based study, it provides the first comprehensive baseline data on clinical characteristics, laboratory evaluation, induction outcome, and toxicity. Further work is planned to uncover possible biologic differences of ALL in the region and to improve diagnosis and management.
Background-Inadequate nursing care is a major impediment to development of effective programs for... more Background-Inadequate nursing care is a major impediment to development of effective programs for treatment of childhood cancer in low-income countries. When the International Outreach Program at St. Jude Children's Research Hospital established partner sites in lowincome countries, few nurses had pediatric oncology skills or experience. A comprehensive nursing program was developed to promote the provision of quality nursing care, and in this manuscript we describe the program's impact on 20 selected Joint Commission International (JCI) quality standards at the National Pediatric Oncology Unit in Guatemala. We utilized JCI standards to focus the nursing evaluation and implementation of improvements. These standards were developed to assess public hospitals in low-income countries and are recognized as the gold standard of international quality evaluation. Methods-We compared the number of JCI standards met before and after the nursing program was implemented using direct observation of nursing care; review of medical records, policies, procedures, and job descriptions; and interviews with staff. Results-In 2006, only 1 of the 20 standards was met fully, 2 partially, and 17 not met. In 2009, 16 were met fully, 1 partially, and 3 not met. Several factors contributed to the improvement. The pre-program quality evaluation provided objective and credible findings and an organizational framework for implementing change. The medical, administrative, and nursing staff worked together to improve nursing standards.
Protocol-based care for children with acute lymphoblastic leukemia Cure of acute lymphoblastic le... more Protocol-based care for children with acute lymphoblastic leukemia Cure of acute lymphoblastic leukemia (ALL) requires accurate diagnosis, precise risk stratification, delivery of a complex and prolonged regimen of chemotherapy, and assiduous supportive care. Delivery of this care is best accomplished by following a protocol that lists diagnostic requirements, defines risk categories, specifies chemotherapy drugs, doses, and schedules, and provides guidelines to optimize supportive care. Protocols developed in highincome countries must be adapted to local conditions in low-income countries (LIC) and results frequently assessed to improve care.1 Development of the protocol document and defining the treatment regimen is only the beginning. Medical and nursing staff must be educated about proper implementation of diagnostic and therapeutic procedures and correct administration of medications. A reliable supply of medications and infrastructure for supportive care must be assured, and patient education materials prepared, reviewed, and disseminated. A suitable medical record system and data management program must be implemented to track therapy administered, outcomes, and compliance. Indeed, implementation of the protocol impacts results far more than the fine points of the regimen itself, and barriers to proper implementation can lead to poor results even when using established treatment regimens. For example, in a cohort of children with ALL in Yogyakarta, Indonesia, treated uniformly with standard chemotherapy, event-free survival was 10% among underprivileged patients and 40% among prosperous patients, largely due to a 47% rate of refusal and abandonment of therapy among the underprivileged versus 2% among the prosperous.2
Background. Cure rates among children with brain tumors differ between low-income and high-income... more Background. Cure rates among children with brain tumors differ between low-income and high-income countries. To evaluate causes of these differences, we analyzed aspects of care provided to pediatric neuro-oncology patients in a low middle-income South American country. Methods. Three methods were used to evaluate treatment of children with brain tumors in Paraguay: (1) a quantitative needs assessment questionnaire for local treating physicians, (2) site visits to assess 3 tertiary care centers in Asunció n and a satellite clinic in an underdeveloped area, and (3) interviews with health care workers from relevant disciplines to determine their perceptions of available resources. Treatment failure was defined as abandonment of therapy, relapse, or death. Results. All 3 tertiary care facilities have access to chemotherapy and pediatric oncologists but lack training and tools for neuropathology and optimal neurosurgery. The 2 public hospitals also lack access to appropriate radiological tests and timely radiotherapy. These results demonstrate disparities in Paraguay, with rates of treatment failure ranging from 37% to 83% among the 3 facilities. Conclusions. National and center-specific deficiencies in resources to manage pediatric brain tumors contribute to poor outcomes in Paraguay and suggest that both national and center-specific interventions are warranted to improve care. Disparities in Paraguay reflect different levels of governmental and philanthropic support, program development, and socioeconomic status of patients and families, which must be considered when developing targeted strategies to improve management. Effective targeted interventions can serve as a model to develop pediatric brain tumor programs in other lowand middle-income countries.
The COVID-19 pandemic poses an unprecedented health crisis in all socio-economic regions across t... more The COVID-19 pandemic poses an unprecedented health crisis in all socio-economic regions across the globe. While the pandemic has had a profound impact on access to and delivery of health care by all services, it has been particularly disruptive for the care of patients with life-threatening noncommunicable diseases (NCDs) such as the treatment of children and young people with cancer. The reduction in child mortality from preventable causes over the last 50 years has seen childhood cancer emerge as a major unmet health care need. Whilst survival rates of 85% have been achieved in high income countries, this has not yet been translated into similar outcomes for children with cancer in resource-limited settings where survival averages 30%. Launched in 2018, by the World Health Organization (WHO), the Global Initiative for Childhood Cancer (GICC) is a pivotal effort by the international community to achieve at least 60% survival for children with cancer by 2030. The WHO GICC is alread...
PURPOSE In 2012, the French African Pediatric Oncology Group established the African School of Pe... more PURPOSE In 2012, the French African Pediatric Oncology Group established the African School of Pediatric Oncology (EAOP), a training program supported by the Sanofi Espoir Foundation’s My Child Matters program. As part of the EAOP, the pediatric oncology training diploma is a 1-year intensive training program. We present this training and certification program as a model for subspecialty training for low- and middle-income countries. METHODS A 14-member committee of multidisciplinary experts finalized a curriculum patterned on the French model Diplôme Inter-Universitaire d’Oncologie Pédiatrique. The program trained per year 15 to 25 physician participants committed to returning to their home country to work at their parent institutions. Training included didactic lectures, both in person and online; an onsite practicum; and a research project. Evaluation included participant evaluation and feedback on the effectiveness and quality of training. RESULTS The first cohort began in Octob...
Each year ~429,000 children and adolescents aged 0 to 19 years are expected to develop cancer. Fi... more Each year ~429,000 children and adolescents aged 0 to 19 years are expected to develop cancer. Five-year survival rates exceed 80% for the 45,000 children with cancer in high-income countries (HICs) but are less than 30% for the 384,000 children in lower-middle-income countries (LMICs). Improved survival rates in HICs have been achieved through multidisciplinary care and research, with treatment regimens using mostly generic medicines and optimized risk stratification. Children’s outcomes in LMICs can be improved through global collaborative partnerships that help local leaders adapt effective treatments to local resources and clinical needs, as well as address common problems such as delayed diagnosis and treatment abandonment. Together, these approaches may bring within reach the global survival target recently set by the World Health Organization: 60% survival for all children with cancer by 2030.
SummaryIn high‐income countries, more than 90% of children with mature B‐cell lymphomas are cured... more SummaryIn high‐income countries, more than 90% of children with mature B‐cell lymphomas are cured with frontline therapy. However, cure requires prompt and correct diagnosis, careful risk stratification, very intense chemotherapy and meticulous supportive care, together with logistical support for patients who live far from the cancer centre or face financial barriers to receiving care. In low‐ and middle‐income countries (LMIC), cure rates range from 20% to 70% because of lack of diagnosis, misdiagnosis, abandonment of treatment, toxic death and excess relapse with reduced‐intensity regimens. Fortunately, a wide range of successful interventions in LMIC have reduced these causes of avoidable treatment failure. Public awareness campaigns have led to societal awareness of childhood cancer; telepathology has improved diagnosis, even in remote areas; subsidized chemotherapy, transportation, housing and food have reduced abandonment; and hand hygiene, nurse training programmes and healt...
This article may be used for non-commercial purposes in accordance with Wiley Terms and Condition... more This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
Pediatric radiotherapy is a critical part of pediatric oncology protocols and the quality of the ... more Pediatric radiotherapy is a critical part of pediatric oncology protocols and the quality of the radiotherapy may determine the future quality of life for long-term survivors. Multidisciplinary team decision making provides the basis for high-quality care. However, delivery of high-quality radiotherapy is dependent on resources. This article provides guidelines for delivery of good quality radiation therapy in resource-limited countries based on rational procurement and maintenance planning, protocol development, three-dimensional planning, quality assurance, and adequate staff numbers and training.
Treatment refusal and abandonment are major causes of treatment failure for children with cancer ... more Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integra...
The utilization of adapted regimens for the treatment of pediatric malignancies has greatly impro... more The utilization of adapted regimens for the treatment of pediatric malignancies has greatly improved clinical outcomes for children receiving treatment in low- and middle-income countries (LMIC). Nutritional depletion has been associated with poorer outcomes, increased abandonment of therapy, and treatment-related toxicities. Surveys have found that nutritional intervention is not incorporated routinely into supportive care regimens. Establishing nutritional programs based upon institutional resources may facilitate the incorporation of nutritional therapy into clinical care in a way that is feasible in all settings. We present a framework for establishing and monitoring of nutritional care based on the infrastructure of institutions in LMIC.
Population-based cancer registries (PBCRs) generate estimates of incidence and survival that are ... more Population-based cancer registries (PBCRs) generate estimates of incidence and survival that are essential for cancer surveillance, research, and cancer control strategies. Though cancer stage data allow meaningful assessments of changes in cancer incidence and outcomes, stage is not collected by most PBCRs. The principal method of staging adult cancers is the tumor, node, metastasis (TNM) classification. Paediatric cancer staging criteria vary by diagnosis, have evolved over time, and sometimes vary by cooperative trial group. Consistency in collection of staging data has therefore been challenging for PBCRs. We assembled key experts and stakeholders (oncologists, cancer registrars, epidemiologists) and utilized a modified-Delphi approach to establish principles guiding paediatric cancer stage collection. Using these principles, recommendations were made on which staging systems should be adopted by PBCRs for the major childhood cancers, including adaptations for low-income countries. Wide adoption of these Toronto Guidelines among registries will facilitate international comparative incidence and outcome studies.
Although morbidity from childhood cancer is second only to unintentional injuries in highincome c... more Although morbidity from childhood cancer is second only to unintentional injuries in highincome countries, in low-income countries, it hardly hits the radar screen compared with death from pneumonia, diarrhea, malaria, neonatal sepsis, preterm birth, and neonatal asphyxia. Nevertheless, the extraordinary progress made in treating childhood cancer in high-income countries brings into harsh focus the mammoth disparities that exist in impoverished areas of the world. As the capacity to diagnose and treat childhood cancer improves in low-and middle-income countries, the ability to improve outcomes for the more common diseases benefits as well. The authors have summarized the issues related to childhood cancer care with thoughtful attention to how children everywhere can gain from the advances in medical science in high-income nations.
The reader should understand the pathophysiology of tumor lysis syndrome and ■ apply this underst... more The reader should understand the pathophysiology of tumor lysis syndrome and ■ apply this understanding to identify the metabolic derangements and malignancies most commonly associated with the condition. The reader should be able to describe the treatment of tumor lysis syndrome ■ including the use of rasburicase. The reader should be able to list the malignancies commonly associated with the ■ superior mediastinal syndrome and possess a clear understanding of the risk of a mediastinal mass for life-threatening airway occlusion or vascular compression particularly in the setting of sedation or anesthesia. Moreover, mediastinal masses represent another potentially life-threatening condition with high risk for airway occlusion and vascular compression. In addition to describing the diagnoses that commonly present with a mediastinal mass, the risks associated with sedation and anesthesia in this condition, as well as the importance of balancing these risks with the need for a defi nitive diagnosis, will be emphasized.
Survival rates among children with leukaemia in low-income countries are lower than those in high... more Survival rates among children with leukaemia in low-income countries are lower than those in high-income countries. This has been attributed in part to higher treatment-related mortality (TRM). We examined the demographics, treatment, and outcomes of paediatric patients in El Salvador with acute lymphoblastic leukaemia (ALL) or acute myeloid leukaemia (AML) to determine the incidence, causes, and risk factors for TRM. Two trained data managers collected data prospectively; no patients were excluded. Biological, socioeconomic and nutritional predictors were examined. A total of 469 patients with ALL and 78 patients with AML were included. The 2-year cumulative incidence of TRM was significantly higher among children with AML (35.4 ± 6.4%) than those with ALL (12.5±1.7%; Po0.0001). However, the proportion of deaths attributable to the toxicity of treatment did not differ significantly between AML (25/47, 53.2%) and ALL (55/107, 51.4%; P ¼ 0.98). Among children with ALL, low monthly income (P ¼ 0.04) and low parental education (P ¼ 0.02) significantly increased the risk of TRM. Among children with AML, biological, socioeconomic, and nutritional variables were not associated with TRM. In this low-income country, toxic death significantly contributes to mortality in both ALL and AML. A better understanding of the effect of socioeconomic status on TRM may suggest specific strategies for patients with ALL.
The Policy Forum allows health policy makers around the world to discuss challenges and opportuni... more The Policy Forum allows health policy makers around the world to discuss challenges and opportunities for improving health care in their societies.
Background: The majority of young people in need of palliative care live in low-and middle-income... more Background: The majority of young people in need of palliative care live in low-and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care services available to young people with life-limiting conditions in low-and middle-income countries and assessed core elements with respect to availability, gaps, and under-reported aspects. Methods: PubMed, CINAHL, EMBASE (1980-2013), and secondary bibliographies were searched for publications that included patients younger than 25 years with life-limiting conditions and described palliative care programs in low-and middle-income countries. A data extraction checklist considered 15 items across seven domains: access, education/capacity building, health system support, pain management, symptom management, end-of-life care, and bereavement. Data were aggregated by program and country. Results: Of 1572 records, 238 met criteria for full-text review; 34 qualified for inclusion, representing 30 programs in 21 countries. The median checklist score was 7 (range, 1-14) of 10 reported (range, 3-14). The most pervasive gaps were in national health system support (unavailable in 7 of 17 countries with programs reporting), specialized education (unavailable in 7 of 19 countries with programs reporting), and comprehensive opioid access (unavailable in 14 of 21 countries with programs reporting). Underreported elements included specified practices for pain management and end-of-life support. Conclusion: Comprehensive pediatric palliative care provision is possible even in markedly impoverished settings. Improved national health system support, specialized training and opioid access are key targets for research and advocacy. Application of a checklist methodology can promote awareness of gaps to guide program evaluation, reporting, and strengthening.
Background. Little is known about childhood ALL in the Middle East. This study was undertaken by ... more Background. Little is known about childhood ALL in the Middle East. This study was undertaken by MECCA as initial efforts in collaborative data collection to provide clinical and demographic information on children with ALL in the Middle East. Procedure. Clinical and laboratory data for patients with ALL between January 2008 and April 2012 were prospectively collected from institutions in 14 Middle East countries and entered into a custom-built-database during induction phase. All laboratory studies including cytogenetics were done at local institutions. Results. The 1,171 voluntarily enrolled patients had a mean age of 6.1 AE 3.9 years and 59.2% were boys. TALL represented 14.8% and 84.2% had B-precursor ALL. At diagnosis, 5.6% had CNS disease. The distribution of common genetic abnormalities reflected a similar percentage of hyperdiploidy (25.6%), but a lower percentage of ETV6-RUNX1 translocation (14.7%) compared to large series reported from Western populations. By clinical criteria, 47.1% were low/standard risk, 16.9% were intermediate risk, and 36% were high risk. Most patients received all their care at the same unit (96.9%). Patients had excellent induction response to chemotherapy with an overall complete remission rate of 96%. Induction toxicities were acceptable. Conclusions. This first collaborative study has established a process for prospective data collection and future multinational collaborative research in the Middle East. Despite the limitations of an incomplete population-based study, it provides the first comprehensive baseline data on clinical characteristics, laboratory evaluation, induction outcome, and toxicity. Further work is planned to uncover possible biologic differences of ALL in the region and to improve diagnosis and management.
Background-Inadequate nursing care is a major impediment to development of effective programs for... more Background-Inadequate nursing care is a major impediment to development of effective programs for treatment of childhood cancer in low-income countries. When the International Outreach Program at St. Jude Children's Research Hospital established partner sites in lowincome countries, few nurses had pediatric oncology skills or experience. A comprehensive nursing program was developed to promote the provision of quality nursing care, and in this manuscript we describe the program's impact on 20 selected Joint Commission International (JCI) quality standards at the National Pediatric Oncology Unit in Guatemala. We utilized JCI standards to focus the nursing evaluation and implementation of improvements. These standards were developed to assess public hospitals in low-income countries and are recognized as the gold standard of international quality evaluation. Methods-We compared the number of JCI standards met before and after the nursing program was implemented using direct observation of nursing care; review of medical records, policies, procedures, and job descriptions; and interviews with staff. Results-In 2006, only 1 of the 20 standards was met fully, 2 partially, and 17 not met. In 2009, 16 were met fully, 1 partially, and 3 not met. Several factors contributed to the improvement. The pre-program quality evaluation provided objective and credible findings and an organizational framework for implementing change. The medical, administrative, and nursing staff worked together to improve nursing standards.
Protocol-based care for children with acute lymphoblastic leukemia Cure of acute lymphoblastic le... more Protocol-based care for children with acute lymphoblastic leukemia Cure of acute lymphoblastic leukemia (ALL) requires accurate diagnosis, precise risk stratification, delivery of a complex and prolonged regimen of chemotherapy, and assiduous supportive care. Delivery of this care is best accomplished by following a protocol that lists diagnostic requirements, defines risk categories, specifies chemotherapy drugs, doses, and schedules, and provides guidelines to optimize supportive care. Protocols developed in highincome countries must be adapted to local conditions in low-income countries (LIC) and results frequently assessed to improve care.1 Development of the protocol document and defining the treatment regimen is only the beginning. Medical and nursing staff must be educated about proper implementation of diagnostic and therapeutic procedures and correct administration of medications. A reliable supply of medications and infrastructure for supportive care must be assured, and patient education materials prepared, reviewed, and disseminated. A suitable medical record system and data management program must be implemented to track therapy administered, outcomes, and compliance. Indeed, implementation of the protocol impacts results far more than the fine points of the regimen itself, and barriers to proper implementation can lead to poor results even when using established treatment regimens. For example, in a cohort of children with ALL in Yogyakarta, Indonesia, treated uniformly with standard chemotherapy, event-free survival was 10% among underprivileged patients and 40% among prosperous patients, largely due to a 47% rate of refusal and abandonment of therapy among the underprivileged versus 2% among the prosperous.2
Background. Cure rates among children with brain tumors differ between low-income and high-income... more Background. Cure rates among children with brain tumors differ between low-income and high-income countries. To evaluate causes of these differences, we analyzed aspects of care provided to pediatric neuro-oncology patients in a low middle-income South American country. Methods. Three methods were used to evaluate treatment of children with brain tumors in Paraguay: (1) a quantitative needs assessment questionnaire for local treating physicians, (2) site visits to assess 3 tertiary care centers in Asunció n and a satellite clinic in an underdeveloped area, and (3) interviews with health care workers from relevant disciplines to determine their perceptions of available resources. Treatment failure was defined as abandonment of therapy, relapse, or death. Results. All 3 tertiary care facilities have access to chemotherapy and pediatric oncologists but lack training and tools for neuropathology and optimal neurosurgery. The 2 public hospitals also lack access to appropriate radiological tests and timely radiotherapy. These results demonstrate disparities in Paraguay, with rates of treatment failure ranging from 37% to 83% among the 3 facilities. Conclusions. National and center-specific deficiencies in resources to manage pediatric brain tumors contribute to poor outcomes in Paraguay and suggest that both national and center-specific interventions are warranted to improve care. Disparities in Paraguay reflect different levels of governmental and philanthropic support, program development, and socioeconomic status of patients and families, which must be considered when developing targeted strategies to improve management. Effective targeted interventions can serve as a model to develop pediatric brain tumor programs in other lowand middle-income countries.
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