The lived experience of people affected by cancer: A global cross-sectional survey protocol.

A diagnosis of cancer impacts the person's physical and mental health and the psychosocial and financial health of their caregivers. While data on the experience of living with cancer is available, there is a dearth of data from persons in low- and middle-income countries (LMICs). The perspectives of other impacted individuals also remain understudied (e.g., bereaved family members), as well as the impact on survivors and their families over time. The objective of this study is to describe the psychosocial and financial impact of cancer on people diagnosed with cancer as a child, adolescent or adult, their families/caregivers, and the family members of those who have died from cancer, in high-income countries (HICs) and LMICs. This study is an observational, descriptive, quantitative study. Data will be collected anonymously via a digital online cross-sectional survey distributed globally by the World Health Organization (WHO) via the LimeSurvey software. Participants will include (a) adults aged 18+ who have been diagnosed with cancer at any age, who are currently undergoing cancer treatment or who have completed cancer treatment; (b) adult family members of individuals of any age with a cancer diagnosis, who are currently undergoing cancer treatment or who have completed cancer treatment; and (c) bereaved family members. Participants will be anonymously recruited via convenience and snowball sampling through networks of organisations related to cancer. Survey results will be analysed quantitatively per respondent group, per time from diagnosis, per disease and country. Results will be disseminated in peer-reviewed journals and at scientific conferences; a summary of results will be available on the WHO website. This study will suggest public health interventions and policy responses to support people affected by cancer and may also lead to subsequent research focusing on the needs of people affected by cancer.

Developing and sustaining high-quality care for children with cancer: the WHO Global Initiative for Childhood Cancer / Desarrollo y mantenimiento de una atención de alta calidad para pacientes pediátricos con cáncer: la Iniciativa Mundial de la OMS contra el Cáncer Infantil / Desenvolvimento e manutenção de atenção de alta qualidade para crianças com câncer: a Iniciativa Global para o Câncer Infantil da OMS

[ABSTRACT]. Cancer is a major public health concern, impacting nearly 20 million people each year, and it is responsible for 1 in 6 deaths worldwide. The burden of cancer is increasing rapidly, straining health systems that are unable to prevent and manage the disease. Childhood cancer constitutes a significant and relevant public health challenge; it was the ninth leading cause of childhood disease globally, according to findings by the Global Burden of Disease 2017 study. Almost 80% of all children diagnosed with cancer live in low- and middle-income countries where treatment is often unavailable or unaffordable. As a result, only about 15–45% of these children survive compared with more than 80% in high-income countries. This represents a great health inequity. Delivering on the mandate provided by World Health Assembly resolution 70.12, WHO together with St. Jude Children’s Research Hospital and other global partners launched the Global Initiative for Childhood Cancer at the United Nations General Assembly during the third High-level Meeting on the prevention and control of noncommunicable diseases in September 2018. The Initiative aims to increase global survival for children with cancer to at least 60% by 2030, while reducing suffering for all children with cancer. Five years after launching the Initiative, more than 70 countries across the World Health Organization’s 6 regions have advanced to different phases of action through implementation of the Initiative’s CureAll framework for action. Many successful approaches to implementing the CureAll pillars and enablers have demonstrated that improving care for children with cancer in low- and middle-income countries is possible as long as there is strong political will, multisectoral commitments and strategic investment.

[RESUMEN]. El cáncer es un importante problema de salud pública: afecta a cerca de 20 millones de personas cada año y es responsable de 1 de cada 6 muertes a nivel mundial. La carga del cáncer está aumentando rápidamente, lo que somete a una gran presión a los sistemas de salud que no pueden prevenir y manejar la enfermedad. El cáncer infantil constituye un importante problema de salud pública y tiene gran relevancia: fue la novena causa de enfermedad infantil a nivel mundial, según los hallazgos del estudio sobre la carga mundial de enfermedad correspondiente al 2017. Casi el 80% de todos los casos de cáncer infantil se registran en países de ingresos bajos o medianos, donde el tratamiento a menudo resulta inasequible o no está disponible. Por este motivo, solo sobreviven entre el 15% y el 45% de estos pacientes pediátricos, frente a más del 80% en los países de ingresos altos. Esto constituye una gran inequidad en materia de salud. En cumplimiento del mandato establecido en la resolución WHA70.12 de la Asamblea Mundial de la Salud, la Organización Mundial de la Salud (OMS) —junto con el hospital pediátrico de investigación St. Jude y otros asociados mundiales— puso en marcha la Iniciativa Mundial contra el Cáncer Infantil ante la Asamblea General de las Naciones Unidas, en ocasión de la tercera reunión de alto nivel sobre la prevención y el control de las enfermedades no transmisibles, celebrada en septiembre del 2018. Esta iniciativa tiene como objetivo incrementar la tasa de supervivencia mundial de los pacientes pediátricos con cáncer hasta por lo menos el 60% para el 2030 y, simultáneamente, reducir el sufrimiento de toda la población infantil con cáncer. Transcurridos cinco años de la puesta en marcha de la iniciativa, más de 70 países de las seis regiones de la OMS han logrado avanzar a distintas fases de actuación mediante la aplicación del marco de acción de la iniciativa denominado CureAll. Ha habido muchos enfoques que han dado buenos resultados para la consecución de los pilares y los elementos facilitadores de CureAll y que han demostrado que es posible mejorar la atención de la población infantil con cáncer en los países de ingresos bajos y medianos, siempre que haya una férrea voluntad política, compromisos multisectoriales e inversiones estratégicas.

[RESUMO]. O câncer é um importante problema de saúde pública que afeta cerca de 20 milhões de pessoas a cada ano e é responsável por uma em cada seis mortes em todo o mundo. A carga do câncer está aumentando rapidamente, sobrecarregando os sistemas de saúde, que não conseguem prevenir e controlar a doença. O câncer infantil constitui um desafio significativo e relevante para a saúde pública: essa foi a nona principal causa de doenças infantis em todo o mundo, de acordo com os resultados do estudo Global Burden of Disease 2017. Quase 80% de todas as crianças diagnosticadas com câncer vivem em países de baixa e média renda, onde o tratamento geralmente não está disponível ou é inacessível. Como resultado, apenas cerca de 15% a 45% dessas crianças sobrevivem, em comparação com mais de 80% nos países de alta renda. Isso representa uma grande falta de equidade em saúde. Cumprindo o estabelecido pela Resolução 70.12 da Assembleia Mundial da Saúde, a Organização Mundial da Saúde (OMS), juntamente com o Saint Jude Children's Research Hospital e outros parceiros mundiais, lançou a Iniciativa Global para o Câncer Infantil na Assembleia Geral das Nações Unidas, durante a terceira Reunião de Alto Nível sobre prevenção e controle de doenças não transmissíveis, em setembro de 2018. A Iniciativa tem como objetivo aumentar a sobrevida global de crianças com câncer para pelo menos 60% até 2030 e, ao mesmo tempo, reduzir o sofrimento de todas as crianças com câncer. Cinco anos após o lançamento da Iniciativa, mais de 70 países das seis regiões da OMS avançaram para diferentes fases de ação por meio da implementação da estrutura CureAll da Iniciativa. O sucesso de muitas abordagens para implementação dos pilares e facilitadores da CureAll demonstraram que é possível melhorar o atendimento a crianças com câncer em países de baixa e média renda, desde que haja forte vontade política, compromissos multissetoriais e investimento estratégico.

Developing and sustaining high-quality care for children with cancer: the WHO Global Initiative for Childhood Cancer.

Cancer is a major public health concern, impacting nearly 20 million people each year, and it is responsible for 1 in 6 deaths worldwide. The burden of cancer is increasing rapidly, straining health systems that are unable to prevent and manage the disease. Childhood cancer constitutes a significant and relevant public health challenge; it was the ninth leading cause of childhood disease globally, according to findings by the Global Burden of Disease 2017 study. Almost 80% of all children diagnosed with cancer live in low- and middle-income countries where treatment is often unavailable or unaffordable. As a result, only about 15-45% of these children survive compared with more than 80% in high-income countries. This represents a great health inequity. Delivering on the mandate provided by World Health Assembly resolution 70.12, WHO together with St. Jude Children's Research Hospital and other global partners launched the Global Initiative for Childhood Cancer at the United Nations General Assembly during the third High-level Meeting on the prevention and control of noncommunicable diseases in September 2018. The Initiative aims to increase global survival for children with cancer to at least 60% by 2030, while reducing suffering for all children with cancer. Five years after launching the Initiative, more than 70 countries across the World Health Organization's 6 regions have advanced to different phases of action through implementation of the Initiative's CureAll framework for action. Many successful approaches to implementing the CureAll pillars and enablers have demonstrated that improving care for children with cancer in low- and middle-income countries is possible as long as there is strong political will, multisectoral commitments and strategic investment.

El cáncer es un importante problema de salud pública: afecta a cerca de 20 millones de personas cada año y es responsable de 1 de cada 6 muertes a nivel mundial. La carga del cáncer está aumentando rápidamente, lo que somete a una gran presión a los sistemas de salud que no pueden prevenir y manejar la enfermedad. El cáncer infantil constituye un importante problema de salud pública y tiene gran relevancia: fue la novena causa de enfermedad infantil a nivel mundial, según los hallazgos del estudio sobre la carga mundial de enfermedad correspondiente al 2017. Casi el 80% de todos los casos de cáncer infantil se registran en países de ingresos bajos o medianos, donde el tratamiento a menudo resulta inasequible o no está disponible. Por este motivo, solo sobreviven entre el 15% y el 45% de estos pacientes pediátricos, frente a más del 80% en los países de ingresos altos. Esto constituye una gran inequidad en materia de salud.En cumplimiento del mandato establecido en la resolución WHA70.12 de la Asamblea Mundial de la Salud, la Organización Mundial de la Salud (OMS) ­junto con el hospital pediátrico de investigación St. Jude y otros asociados mundiales­ puso en marcha la Iniciativa Mundial contra el Cáncer Infantil ante la Asamblea General de las Naciones Unidas, en ocasión de la tercera reunión de alto nivel sobre la prevención y el control de las enfermedades no transmisibles, celebrada en septiembre del 2018. Esta iniciativa tiene como objetivo incrementar la tasa de supervivencia mundial de los pacientes pediátricos con cáncer hasta por lo menos el 60% para el 2030 y, simultáneamente, reducir el sufrimiento de toda la población infantil con cáncer. Transcurridos cinco años de la puesta en marcha de la iniciativa, más de 70 países de las seis regiones de la OMS han logrado avanzar a distintas fases de actuación mediante la aplicación del marco de acción de la iniciativa denominado CureAll. Ha habido muchos enfoques que han dado buenos resultados para la consecución de los pilares y los elementos facilitadores de CureAll y que han demostrado que es posible mejorar la atención de la población infantil con cáncer en los países de ingresos bajos y medianos, siempre que haya una férrea voluntad política, compromisos multisectoriales e inversiones estratégicas.

O câncer é um importante problema de saúde pública que afeta cerca de 20 milhões de pessoas a cada ano e é responsável por uma em cada seis mortes em todo o mundo. A carga do câncer está aumentando rapidamente, sobrecarregando os sistemas de saúde, que não conseguem prevenir e controlar a doença. O câncer infantil constitui um desafio significativo e relevante para a saúde pública: essa foi a nona principal causa de doenças infantis em todo o mundo, de acordo com os resultados do estudo Global Burden of Disease 2017. Quase 80% de todas as crianças diagnosticadas com câncer vivem em países de baixa e média renda, onde o tratamento geralmente não está disponível ou é inacessível. Como resultado, apenas cerca de 15% a 45% dessas crianças sobrevivem, em comparação com mais de 80% nos países de alta renda. Isso representa uma grande falta de equidade em saúde.Cumprindo o estabelecido pela Resolução 70.12 da Assembleia Mundial da Saúde, a Organização Mundial da Saúde (OMS), juntamente com o Saint Jude Children's Research Hospital e outros parceiros mundiais, lançou a Iniciativa Global para o Câncer Infantil na Assembleia Geral das Nações Unidas, durante a terceira Reunião de Alto Nível sobre prevenção e controle de doenças não transmissíveis, em setembro de 2018. A Iniciativa tem como objetivo aumentar a sobrevida global de crianças com câncer para pelo menos 60% até 2030 e, ao mesmo tempo, reduzir o sofrimento de todas as crianças com câncer. Cinco anos após o lançamento da Iniciativa, mais de 70 países das seis regiões da OMS avançaram para diferentes fases de ação por meio da implementação da estrutura CureAll da Iniciativa. O sucesso de muitas abordagens para implementação dos pilares e facilitadores da CureAll demonstraram que é possível melhorar o atendimento a crianças com câncer em países de baixa e média renda, desde que haja forte vontade política, compromissos multissetoriais e investimento estratégico.

Advances in the Global Initiative for Childhood Cancer: implementation in Latin America and the Caribbean.

This report describes the status of childhood cancer control initiatives in Latin America and the Caribbean (LAC). Progress between 2017 and 2023 is measured using the outcome indicators from the Pan American Health Organization (PAHO) childhood cancer logic model aligned with the World Health Organization Global Initiative for Childhood Cancer (GICC). This report also describes the advances, barriers, and facilitators for the implementation of the GICC at the Regional level. Methods used in this report encompassed a comprehensive approach, incorporating a literature review, interviews, surveys, and a Delphi study developed by the technical team of the PAHO Non-Communicable Diseases and Mental Health Department and by the GICC LAC working group. Since 2017, there has been a substantial increase in the number of countries that have included childhood cancer in their national regulations. Currently, 21 LAC countries are involved in the GICC implementation, activities, and dialogues. However, the objectives for 2030 will only be achieved if Member States overcome the barriers to accelerating the pace of initiative implementation. There is an urgent need to increase the efforts in childhood cancer control in LAC, especially regarding the prioritization of timely detection, essential diagnostics, access to cancer treatment, palliative care, and close follow-up of children and adolescents with cancer.

En este artículo se describe la situación de las iniciativas para el control del cáncer infantil en América Latina y el Caribe. Para medir los progresos entre el 2017 y el 2023, se utilizan los indicadores de resultados del modelo lógico del cáncer infantil de la Organización Panamericana de la Salud (OPS) que es coherente con la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. También se describen los avances, los obstáculos y los elementos que han facilitado la aplicación de esa iniciativa en la Región Los métodos utilizados en este trabajo incluyeron un enfoque integral que incorporó una revisión bibliográfica, entrevistas, encuestas y un estudio de tipo Delfos llevado a cabo por el equipo técnico del Departamento de Enfermedades No Transmisibles y Salud Mental de la OPS y por el grupo de trabajo de América Latina y el Caribe de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud.Desde el 2017 ha habido un incremento considerable en el número de países que incorporan el cáncer infantil en sus regulaciones nacionales. En la actualidad, 21 países de América Latina y el Caribe participan en la puesta en práctica, las actividades y las deliberaciones de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. No obstante, los objetivos para el 2030 solo podrán alcanzarse si los Estados Miembros son capaces de superar los obstáculos que dificultan la aceleración del ritmo de aplicación de esta iniciativa. Existe una necesidad urgente de aumentar las actividades dirigidas al control del cáncer infantil en América Latina y el Caribe, en especial en lo que respecta a priorizar la detección temprana, los medios de diagnóstico esenciales, el acceso a los tratamientos oncológicos, los cuidados paliativos y el seguimiento estricto de la población infantil y adolescente con cáncer.

Este relatório descreve a situação das iniciativas de controle do câncer infantil na Região da América Latina e do Caribe (ALC). O progresso alcançado entre 2017 e 2023 foi medido usando os indicadores de resultados intermediários do modelo lógico de câncer infantil da Organização Pan-Americana da Saúde (OPAS), em linha com a Iniciativa Global para o Câncer Infantil (GICC) da Organização Mundial da Saúde. O relatório também descreve os avanços, as barreiras e os facilitadores para a implementação da iniciativa em nível regional. Os métodos utilizados neste relatório aplicaram uma abordagem abrangente que incluiu revisão da literatura, entrevistas, levantamentos e um estudo Delphi desenvolvido pela equipe técnica do Departamento de Doenças Não Transmissíveis e Saúde Mental da OPAS e pelo grupo de trabalho da GICC para a ALC.Desde 2017, houve um aumento significativo no número de países que passaram a incluir o câncer infantil em regulamentações nacionais. Atualmente, 21 países da América Latina e do Caribe estão envolvidos na implementação da GICC, bem como em atividades e diálogos relacionados. No entanto, os objetivos para 2030 só serão alcançados se os Estados Membros superarem as barreiras ao aceleramento do ritmo de implementação da iniciativa. Existe uma necessidade urgente de intensificar os esforços de controle do câncer infantil na ALC, especialmente no tocante à priorização da detecção em tempo hábil, diagnósticos essenciais, acesso a tratamentos oncológicos, cuidados paliativos e acompanhamento cuidadoso de crianças e adolescentes com câncer.

Advances in the Global Initiative for Childhood Cancer: implementation in Latin America and the Caribbean / Adelantos en la Iniciativa Mundial contra el Cáncer Infantil: aplicación en América Latina y el Caribe / Avanços na Iniciativa Global para o Câncer Infantil da OMS: implementação na América Latina e no Caribe

[ABSTRACT]. This report describes the status of childhood cancer control initiatives in Latin America and the Caribbean (LAC). Progress between 2017 and 2023 is measured using the outcome indicators from the Pan American Health Organization (PAHO) childhood cancer logic model aligned with the World Health Organization Global Initiative for Childhood Cancer (GICC). This report also describes the advances, barriers, and facilitators for the implementation of the GICC at the Regional level. Methods used in this report encompassed a comprehensive approach, incorporating a literature review, interviews, surveys, and a Delphi study developed by the technical team of the PAHO Non-Communicable Diseases and Mental Health Department and by the GICC LAC working group. Since 2017, there has been a substantial increase in the number of countries that have included childhood cancer in their national regulations. Currently, 21 LAC countries are involved in the GICC implementation, activities, and dialogues. However, the objectives for 2030 will only be achieved if Member States overcome the barriers to accelerating the pace of initiative implementation. There is an urgent need to increase the efforts in childhood cancer control in LAC, especially regarding the prioritization of timely detection, essential diagnostics, access to cancer treatment, palliative care, and close follow-up of children and adolescents with cancer.

[RESUMEN]. En este artículo se describe la situación de las iniciativas para el control del cáncer infantil en América Latina y el Caribe. Para medir los progresos entre el 2017 y el 2023, se utilizan los indicadores de resultados del modelo lógico del cáncer infantil de la Organización Panamericana de la Salud (OPS) que es coherente con la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. También se describen los avances, los obstáculos y los elementos que han facilitado la aplicación de esa iniciativa en la Región Los métodos utilizados en este trabajo incluyeron un enfoque integral que incorporó una revisión bibliográfica, entrevistas, encuestas y un estudio de tipo Delfos llevado a cabo por el equipo técnico del Departamento de Enfermedades No Transmisibles y Salud Mental de la OPS y por el grupo de trabajo de América Latina y el Caribe de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. Desde el 2017 ha habido un incremento considerable en el número de países que incorporan el cáncer infantil en sus regulaciones nacionales. En la actualidad, 21 países de América Latina y el Caribe participan en la puesta en práctica, las actividades y las deliberaciones de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. No obstante, los objetivos para el 2030 solo podrán alcanzarse si los Estados Miembros son capaces de superar los obstáculos que dificultan la aceleración del ritmo de aplicación de esta iniciativa. Existe una necesidad urgente de aumentar las actividades dirigidas al control del cáncer infantil en América Latina y el Caribe, en especial en lo que respecta a priorizar la detección temprana, los medios de diagnóstico esenciales, el acceso a los tratamientos oncológicos, los cuidados paliativos y el seguimiento estricto de la población infantil y adolescente con cáncer.

[RESUMO]. Este relatório descreve a situação das iniciativas de controle do câncer infantil na Região da América Latina e do Caribe (ALC). O progresso alcançado entre 2017 e 2023 foi medido usando os indicadores de resultados intermediários do modelo lógico de câncer infantil da Organização Pan-Americana da Saúde (OPAS), em linha com a Iniciativa Global para o Câncer Infantil (GICC) da Organização Mundial da Saúde. O relatório também descreve os avanços, as barreiras e os facilitadores para a implementação da iniciativa em nível regional. Os métodos utilizados neste relatório aplicaram uma abordagem abrangente que incluiu revisão da literatura, entrevistas, levantamentos e um estudo Delphi desenvolvido pela equipe técnica do Departamento de Doenças Não Transmissíveis e Saúde Mental da OPAS e pelo grupo de trabalho da GICC para a ALC. Desde 2017, houve um aumento significativo no número de países que passaram a incluir o câncer infantil em regulamentações nacionais. Atualmente, 21 países da América Latina e do Caribe estão envolvidos na imple- mentação da GICC, bem como em atividades e diálogos relacionados. No entanto, os objetivos para 2030 só serão alcançados se os Estados Membros superarem as barreiras ao aceleramento do ritmo de implementação da iniciativa. Existe uma necessidade urgente de intensificar os esforços de controle do câncer infantil na ALC, especialmente no tocante à priorização da detecção em tempo hábil, diagnósticos essenciais, acesso a tratamentos oncológicos, cuidados paliativos e acompanhamento cuidadoso de crianças e adoles- centes com câncer.

Rhabdomyosarcoma in low- and middle-income countries: A report from the Asociacion de Hemato-oncología Pediatrica de Centro América (AHOPCA).

This report describes the results of an observational study dedicated to rhabdomyosarcoma developed by the Asociación de Hemato-oncología Pediatrica de Centro América (AHOPCA) between 2001 and 2018. Overall, 337 previously untreated patients < 18 years old were included in the analysis; 58% had unresected disease, and 19% were metastatic at diagnosis. With a median follow-up of 6.6 years, five-year event-free and overall survival rates were 30% and 33%, respectively. Local progression/relapse was the main cause of treatment failure.

Developing and sustaining high-quality care for children with cancer: the WHO Global Initiative for Childhood Cancer / Desarrollo y mantenimiento de una atención de alta calidad para pacientes pediátricos con cáncer: la Iniciativa Mundial de la OMS contra el Cáncer Infantil / Desenvolvimento e manutenção de atenção de alta qualidade para crianças com câncer: a Iniciativa Global para o Câncer Infantil da OMS

ABSTRACT Cancer is a major public health concern, impacting nearly 20 million people each year, and it is responsible for 1 in 6 deaths worldwide. The burden of cancer is increasing rapidly, straining health systems that are unable to prevent and manage the disease. Childhood cancer constitutes a significant and relevant public health challenge; it was the ninth leading cause of childhood disease globally, according to findings by the Global Burden of Disease 2017 study. Almost 80% of all children diagnosed with cancer live in low- and middle-income countries where treatment is often unavailable or unaffordable. As a result, only about 15-45% of these children survive compared with more than 80% in high-income countries. This represents a great health inequity. Delivering on the mandate provided by World Health Assembly resolution 70.12, WHO together with St. Jude Children's Research Hospital and other global partners launched the Global Initiative for Childhood Cancer at the United Nations General Assembly during the third High-level Meeting on the prevention and control of noncommunicable diseases in September 2018. The Initiative aims to increase global survival for children with cancer to at least 60% by 2030, while reducing suffering for all children with cancer. Five years after launching the Initiative, more than 70 countries across the World Health Organization's 6 regions have advanced to different phases of action through implementation of the Initiative's CureAll framework for action. Many successful approaches to implementing the CureAll pillars and enablers have demonstrated that improving care for children with cancer in low- and middle-income countries is possible as long as there is strong political will, multisectoral commitments and strategic investment.

RESUMEN El cáncer es un importante problema de salud pública: afecta a cerca de 20 millones de personas cada año y es responsable de 1 de cada 6 muertes a nivel mundial. La carga del cáncer está aumentando rápidamente, lo que somete a una gran presión a los sistemas de salud que no pueden prevenir y manejar la enfermedad. El cáncer infantil constituye un importante problema de salud pública y tiene gran relevancia: fue la novena causa de enfermedad infantil a nivel mundial, según los hallazgos del estudio sobre la carga mundial de enfermedad correspondiente al 2017. Casi el 80% de todos los casos de cáncer infantil se registran en países de ingresos bajos o medianos, donde el tratamiento a menudo resulta inasequible o no está disponible. Por este motivo, solo sobreviven entre el 15% y el 45% de estos pacientes pediátricos, frente a más del 80% en los países de ingresos altos. Esto constituye una gran inequidad en materia de salud. En cumplimiento del mandato establecido en la resolución WHA70.12 de la Asamblea Mundial de la Salud, la Organización Mundial de la Salud (OMS) —junto con el hospital pediátrico de investigación St. Jude y otros asociados mundiales— puso en marcha la Iniciativa Mundial contra el Cáncer Infantil ante la Asamblea General de las Naciones Unidas, en ocasión de la tercera reunión de alto nivel sobre la prevención y el control de las enfermedades no transmisibles, celebrada en septiembre del 2018. Esta iniciativa tiene como objetivo incrementar la tasa de supervivencia mundial de los pacientes pediátricos con cáncer hasta por lo menos el 60% para el 2030 y, simultáneamente, reducir el sufrimiento de toda la población infantil con cáncer. Transcurridos cinco años de la puesta en marcha de la iniciativa, más de 70 países de las seis regiones de la OMS han logrado avanzar a distintas fases de actuación mediante la aplicación del marco de acción de la iniciativa denominado CureAll. Ha habido muchos enfoques que han dado buenos resultados para la consecución de los pilares y los elementos facilitadores de CureAll y que han demostrado que es posible mejorar la atención de la población infantil con cáncer en los países de ingresos bajos y medianos, siempre que haya una férrea voluntad política, compromisos multisectoriales e inversiones estratégicas.

RESUMO O câncer é um importante problema de saúde pública que afeta cerca de 20 milhões de pessoas a cada ano e é responsável por uma em cada seis mortes em todo o mundo. A carga do câncer está aumentando rapidamente, sobrecarregando os sistemas de saúde, que não conseguem prevenir e controlar a doença. O câncer infantil constitui um desafio significativo e relevante para a saúde pública: essa foi a nona principal causa de doenças infantis em todo o mundo, de acordo com os resultados do estudo Global Burden of Disease 2017. Quase 80% de todas as crianças diagnosticadas com câncer vivem em países de baixa e média renda, onde o tratamento geralmente não está disponível ou é inacessível. Como resultado, apenas cerca de 15% a 45% dessas crianças sobrevivem, em comparação com mais de 80% nos países de alta renda. Isso representa uma grande falta de equidade em saúde. Cumprindo o estabelecido pela Resolução 70.12 da Assembleia Mundial da Saúde, a Organização Mundial da Saúde (OMS), juntamente com o Saint Jude Children's Research Hospital e outros parceiros mundiais, lançou a Iniciativa Global para o Câncer Infantil na Assembleia Geral das Nações Unidas, durante a terceira Reunião de Alto Nível sobre prevenção e controle de doenças não transmissíveis, em setembro de 2018. A Iniciativa tem como objetivo aumentar a sobrevida global de crianças com câncer para pelo menos 60% até 2030 e, ao mesmo tempo, reduzir o sofrimento de todas as crianças com câncer. Cinco anos após o lançamento da Iniciativa, mais de 70 países das seis regiões da OMS avançaram para diferentes fases de ação por meio da implementação da estrutura CureAll da Iniciativa. O sucesso de muitas abordagens para implementação dos pilares e facilitadores da CureAll demonstraram que é possível melhorar o atendimento a crianças com câncer em países de baixa e média renda, desde que haja forte vontade política, compromissos multissetoriais e investimento estratégico.

Advances in the Global Initiative for Childhood Cancer: implementation in Latin America and the Caribbean / Adelantos en la Iniciativa Mundial contra el Cáncer Infantil: aplicación en América Latina y el Caribe / Avanços na Iniciativa Global para o Câncer Infantil da OMS: implementação na América Latina e no Caribe

ABSTRACT This report describes the status of childhood cancer control initiatives in Latin America and the Caribbean (LAC). Progress between 2017 and 2023 is measured using the outcome indicators from the Pan American Health Organization (PAHO) childhood cancer logic model aligned with the World Health Organization Global Initiative for Childhood Cancer (GICC). This report also describes the advances, barriers, and facilitators for the implementation of the GICC at the Regional level. Methods used in this report encompassed a comprehensive approach, incorporating a literature review, interviews, surveys, and a Delphi study developed by the technical team of the PAHO Non-Communicable Diseases and Mental Health Department and by the GICC LAC working group. Since 2017, there has been a substantial increase in the number of countries that have included childhood cancer in their national regulations. Currently, 21 LAC countries are involved in the GICC implementation, activities, and dialogues. However, the objectives for 2030 will only be achieved if Member States overcome the barriers to accelerating the pace of initiative implementation. There is an urgent need to increase the efforts in childhood cancer control in LAC, especially regarding the prioritization of timely detection, essential diagnostics, access to cancer treatment, palliative care, and close follow-up of children and adolescents with cancer.

RESUMEN En este artículo se describe la situación de las iniciativas para el control del cáncer infantil en América Latina y el Caribe. Para medir los progresos entre el 2017 y el 2023, se utilizan los indicadores de resultados del modelo lógico del cáncer infantil de la Organización Panamericana de la Salud (OPS) que es coherente con la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. También se describen los avances, los obstáculos y los elementos que han facilitado la aplicación de esa iniciativa en la Región Los métodos utilizados en este trabajo incluyeron un enfoque integral que incorporó una revisión bibliográfica, entrevistas, encuestas y un estudio de tipo Delfos llevado a cabo por el equipo técnico del Departamento de Enfermedades No Transmisibles y Salud Mental de la OPS y por el grupo de trabajo de América Latina y el Caribe de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. Desde el 2017 ha habido un incremento considerable en el número de países que incorporan el cáncer infantil en sus regulaciones nacionales. En la actualidad, 21 países de América Latina y el Caribe participan en la puesta en práctica, las actividades y las deliberaciones de la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. No obstante, los objetivos para el 2030 solo podrán alcanzarse si los Estados Miembros son capaces de superar los obstáculos que dificultan la aceleración del ritmo de aplicación de esta iniciativa. Existe una necesidad urgente de aumentar las actividades dirigidas al control del cáncer infantil en América Latina y el Caribe, en especial en lo que respecta a priorizar la detección temprana, los medios de diagnóstico esenciales, el acceso a los tratamientos oncológicos, los cuidados paliativos y el seguimiento estricto de la población infantil y adolescente con cáncer.

RESUMO Este relatório descreve a situação das iniciativas de controle do câncer infantil na Região da América Latina e do Caribe (ALC). O progresso alcançado entre 2017 e 2023 foi medido usando os indicadores de resultados intermediários do modelo lógico de câncer infantil da Organização Pan-Americana da Saúde (OPAS), em linha com a Iniciativa Global para o Câncer Infantil (GICC) da Organização Mundial da Saúde. O relatório também descreve os avanços, as barreiras e os facilitadores para a implementação da iniciativa em nível regional. Os métodos utilizados neste relatório aplicaram uma abordagem abrangente que incluiu revisão da literatura, entrevistas, levantamentos e um estudo Delphi desenvolvido pela equipe técnica do Departamento de Doenças Não Transmissíveis e Saúde Mental da OPAS e pelo grupo de trabalho da GICC para a ALC. Desde 2017, houve um aumento significativo no número de países que passaram a incluir o câncer infantil em regulamentações nacionais. Atualmente, 21 países da América Latina e do Caribe estão envolvidos na implementação da GICC, bem como em atividades e diálogos relacionados. No entanto, os objetivos para 2030 só serão alcançados se os Estados Membros superarem as barreiras ao aceleramento do ritmo de implementação da iniciativa. Existe uma necessidade urgente de intensificar os esforços de controle do câncer infantil na ALC, especialmente no tocante à priorização da detecção em tempo hábil, diagnósticos essenciais, acesso a tratamentos oncológicos, cuidados paliativos e acompanhamento cuidadoso de crianças e adolescentes com câncer.

Delayed Enucleation With Neoadjuvant Chemotherapy in Advanced Intraocular Unilateral Retinoblastoma: AHOPCA II, a Prospective, Multi-Institutional Protocol in Central America.

PURPOSE: Treatment abandonment because of enucleation refusal is a limitation of improving outcomes for children with retinoblastoma in countries with limited resources. Furthermore, many children present with buphthalmos and a high risk of globe rupture during enucleation. To address these unique circumstances, the AHOPCA II protocol introduced neoadjuvant chemotherapy with delayed enucleation. PATIENTS AND METHODS: Patients with advanced unilateral intraocular disease (International Retinoblastoma Staging System [IRSS] stage I) were considered for upfront enucleation. Those with diffuse invasion of the choroid, postlaminar optic nerve, and/or anterior chamber invasion received six cycles of adjuvant chemotherapy (vincristine, carboplatin, and etoposide). Patients with buphthalmos and those with a perceived risk for enucleation refusal and/or abandonment were given two to three cycles of chemotherapy before scheduled enucleation followed by adjuvant chemotherapy to complete six cycles, regardless of pathology. RESULTS: A total of 161 patients had unilateral IRSS stage I disease; 102 underwent upfront enucleation, and 59 had delayed enucleation. The estimated 5-year abandonment-sensitive event-free and overall survival rates for the group were 0.81 ± 0.03 and 0.86 ± 0.03, respectively. The 5-year estimated abandonment-sensitive event-free survival rates for patients undergoing upfront and delayed enucleation were 0.89 ± 0.03 and 0.68 ± 0.06, respectively (P = .001). Compared with AHOPCA I, abandonment for patients with IRSS stage I retinoblastoma decreased from 16% to 4%. CONCLUSION: AHOPCA describes the results of advanced intraocular retinoblastoma treated with neoadjuvant chemotherapy. In eyes with buphthalmos and patients with risk of abandonment, neoadjuvant chemotherapy can be effective when followed by enucleation and adjuvant chemotherapy. Our study suggests that this approach can save patients with buphthalmos from ocular rupture and might reduce refusal of enucleation and abandonment.

Outcome of pediatric non-Hodgkin lymphoma in Central America: A report of the Association of Pediatric Hematology Oncology of Central America (AHOPCA).

BACKGROUND: Treating B-non-Hodgkin lymphoma (B-NHL) in lower-income countries is challenging because of imprecise diagnosis, the increased risk of fatal toxicity associated with advanced disease at presentation, and limited supportive care. PROCEDURE: Central American patients with newly diagnosed stage I or II B-NHL received a modified Berlin-Frankfurt-Münster (BFM) regimen including a prephase (prednisone, cyclophosphamide) followed by A/B/A courses (A: cytarabine, dexamethasone, etoposide, ifosfamide, methotrexate, and intrathecal therapy; B: cyclophosphamide, dexamethasone, doxorubicin, methotrexate, and intrathecal therapy). Those with stage III or IV NHL received additional courses (B/A/B), intensified for stage IV disease by additional vincristine and methotrexate doses. Patients in poor condition received a second prephase treatment before their chemotherapy courses. RESULTS: Between March 2004 and June 2016, of 405 patients with B-NHL, 386 (109 females) were eligible for treatment. Immunohistochemistry was performed in 177 cases (47.4%) and characterized the disease as mature B-cell lymphoma. Stage distribution was as follows: I/II, 31 (8.1%); III, 252 (65.3%); IV, 93 (24.1%); 10 (2.6%) not available. The 3-year overall survival was 70% for the whole group (86% for stages I/II, 75% for stage III, 58% for stage IV). Events included death during induction (34 patients, 8.8%), relapse/progression (46, 11.9%), death in remission (9, 2.3%), second malignancy (1, 0.26%), and death of unknown cause (1, 0.26%). Twenty-three (6%) patients abandoned or refused therapy. CONCLUSIONS: Approximately 70% of children with B-NHL from Central America experienced long-term, disease-free survival with a modified BFM schedule. Toxic death and relapse/resistant disease were the main reasons for treatment failure.

Oral Nutritional Supplementation in Children Treated for Cancer in Low- and Middle-Income Countries Is Feasible and Effective: the Experience of the Children's Hospital Manuel De Jesus Rivera "La Mascota" in Nicaragua.

Children with cancer are particularly vulnerable to malnutrition, which can affect their tolerance of chemotherapy and outcome. In Nicaragua approximately two-thirds of children diagnosed with cancer present with under-nutrition. A nutritional program for children with cancer has been developed at "La Mascota" Hospital. Results of this oral nutritional intervention including difficulties, benefits, and relevance for children treated for cancer in low- and middle-income countries are here reported and discussed.

Traditional and Complementary Medicine in Pediatric Oncology and Low-Middle Income Countries: Recommendations from the International Society of Pediatric Oncology (SIOP), T&CM Collaborative.

Significant strides have been made in the treatment of childhood cancer. Improvements in survival have led to increased attention toward supportive care indications; including the use of traditional and complementary medicine (T&CM). The use of T&CM among children and adolescents with cancer is well documented in both high-income countries (HICs) and low-middle income countries (LMICs). A higher incidence of the use of T&CM has been reported among children undergoing treatment in LMICs, which has elevated concerns related to drug interactions, adherence to therapy, and treatment-related toxicities. These observations have underscored the need for effective models of integrative care that are culturally sensitive yet sustainable in an LMIC setting. We present considerations inclusive of the clinical care, educational opportunities, governmental policy, and research priorities necessary for the development of models of integrative care for pediatric cancer units in an LMIC setting.

Effects of malnutrition on treatment-related morbidity and survival of children with cancer in Nicaragua.

BACKGROUND: Most children with cancer live in resource-limited countries where malnutrition is often prevalent. We identified the relationship between malnutrition and treatment-related morbidity (TRM), abandonment of therapy, and survival of children with cancer in Nicaragua to better inform targeted nutritional interventions. PROCEDURE: We conducted a retrospective review of patients aged 6 months to 18 years with newly diagnosed acute lymphoblastic leukemia, acute myeloid leukemia (AML), Wilms tumor, Hodgkin lymphoma, or Burkitt lymphoma (BL) who were treated between January 1, 2004, and December 31, 2007 at Children's Hospital Manuel de Jesus Rivera in Managua, Nicaragua. Statistical analysis examined the relations among nutritional status and cancer type, risk category, TRM, and event-free survival (EFS). RESULTS: Sixty-seven percent of patients (189/282) were malnourished at diagnosis. Malnutrition was highest among patients with Wilms tumor (85.7%), BL (75%), and AML (74.3%). A total of 92.2% of patients (225/244) experienced morbidity during the first 90 days. Malnutrition was associated with severe infection (P = 0.033). Severely malnourished patients had ≥grade 3 TRM on more days (P = 0.023) and were more likely to experience severe TRM on >50% of days (P = 0.032; OR, 3.27 [95% CI, 1.05-10.16]). Malnourished patients had inferior median EFS (2.25 vs. 5.58 years; P = 0.049), and abandoned therapy more frequently (P = 0.015). CONCLUSIONS: In Nicaragua, pediatric oncology patients with malnutrition at diagnosis experienced increased TRM, abandoned therapy more frequently, and had inferior EFS. Standardized nutritional evaluation of patients with newly diagnosed cancer and targeted provision of nutritional support are essential to decrease TRM and improve outcomes.

Anaplastic Large Cell Lymphoma in Central America: A Report From the Central American Association of Pediatric Hematology Oncology (AHOPCA).

BACKGROUND: Although anaplastic large cell lymphoma (ALCL) is curable in high-income countries (HIC), data from low- and middle-income countries (LMIC) are lacking. We therefore conducted a retrospective study of the Central American Association of Pediatric Hematology Oncology (AHOPCA) experience in treating ALCL. PROCEDURE: We included all patients age <18 years newly diagnosed with ALCL treated between 2000 and 2013 in seven AHOPCA institutions. Retrospective data were extracted from the Pediatric Oncology Network Database. RESULTS: Thirty-one patients met inclusion criteria. Twenty-five (81%) had advanced disease (stages III and IV), six (19%) were treated on the APO (doxorubicin, prednisone, vincristine) regimen, 15 (49%) on multi-agent chemotherapy designed for T-cell lineage malignancies (GuatALCL protocol), and 10 (32%) on BFM-based treatment regimens. Five-year overall event-free survival and overall survival were, respectively, 67.1 ± 8.6% and 66.7 ± 8.7%. All 10 events occurred in patients treated on BFM-based treatment regimens or the GuatALCL protocol, none on APO treatment: two patients experienced relapse, six treatment related mortality (TRM), and two abandonment. CONCLUSIONS: Treatment of ALCL in countries with limited resources is feasible with similar outcomes as in HIC, though the causes of treatment failure differ. Less intensive regimens may be preferable in order to decrease TRM and improve outcomes. Prospective clinical trials determining the ideal treatment for LMIC children with ALCL are necessary.

Improving our understanding of the use of traditional complementary/alternative medicine in children with cancer.

BACKGROUND: Children with cancer in high-income and low-income countries often use traditional complementary/alternative medicine (TCAM). With efforts by the World Health Organization and international twinning programs improving access to conventional care for patients with childhood cancer, understanding the global use of TCAM is important because reliance on TCAM may affect time to presentation, adherence, and abandonment of care. In the current study, the authors describe the process and validation of an international survey documenting the use of TCAM among children with cancer. METHODS: The survey was designed to collect information on TCAM use and associated factors through both open-ended and close-ended questions. During the period between June 2012 and December 2013, the survey was administered to 300 children and adolescents (or their parents) who were undergoing treatment for cancer at a collaborating institution located in Mexico, Uruguay, and Nicaragua. RESULTS: For the majority of constructs, the survey demonstrated strong test-retest reliability as evidenced by an intraclass correlation of at least ≥0.79 in each of the participating countries. The survey demonstrated good internal consistency and reliability across countries (α range from. 77 to. 85 for the belief scale; and an α range from. 60 to. 86 for the cause scale) and convergent validity between TCAM beliefs and behavior constructs (adjusted correlation range, 0.35-0.60). CONCLUSIONS: The results of the current study demonstrate the successful development of a cross-cultural survey that produced results that were reliable and valid. These findings will aid investigators in providing guidelines concerning TCAM, support the development of education and research priorities, and identify variables associated with TCAM that are region-specific.

Barriers to effective treatment of pediatric solid tumors in middle-income countries: can we make sense of the spectrum of nonbiologic factors that influence outcomes?

BACKGROUND: The delivery of effective treatment for pediatric solid tumors poses a particular challenge to centers in middle-income countries (MICs) that already are vigorously addressing pediatric cancer. The objective of this study was to improve the current understanding of barriers to effective treatment of pediatric solid tumors in MICs. METHODS: An ecologic model centered on pediatric sarcoma and expanded to country as the environment was used as a benchmark for studying the delivery of solid tumor care in MICs. Data on resources were gathered from 7 centers that were members of the Central American Association of Pediatric Hematologists and Oncologists (AHOPCA) using an infrastructure assessment tool. Pediatric sarcoma outcomes data were available, were retrieved from hospital-based cancer registries for 6 of the 7 centers, and were analyzed by country. Patients who were diagnosed from January 1, 2000 to December 31, 2009 with osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, and other soft tissue sarcomas were included in the analysis. To explore correlations between resources and outcomes, a pilot performance index was created. RESULTS: The analyses identified specific deficits in human resources, communication, quality, and infrastructure. The treatment abandonment rate, the proportion of metastatic disease at diagnosis, the relapse rate, and the 4-year abandonment-sensitive overall survival (AOS) rate varied considerably by country, ranging from 1% to 38%, from 15% to 54%, from 24% to 52%, and from 21% to 51%, respectively. The treatment abandonment rate correlated inversely with health economic expenditure per capita (r = -0.86; P = .03) and life expectancy at birth (r = -0.93; P = .007). The 4-year AOS rate correlated inversely with the mortality rate among children aged <5 years (r = -0.80; P = 0.05) and correlated directly with the pilot performance index (r = 0.98; P = 0.005). CONCLUSIONS: Initiatives to improve the effectiveness of treatment for pediatric solid tumors in MICs are warranted, particularly for pediatric sarcomas. Building capacity and infrastructure, improving supportive care and communication, and fostering comprehensive, multidisciplinary teams are identified as keystones in Central America. A measure that meaningfully describes performance in delivering pediatric cancer care is feasible and needed to advance comparative, prospective analysis of pediatric cancer care and to define resource clusters internationally.

Pediatric sarcoma in Central America: outcomes, challenges, and plans for improvement.

BACKGROUND: Children with cancer in middle-income countries have inferior outcomes compared with similar children in high-income countries. The magnitude and drivers of this survival gap are not well understood. In the current report, the authors sought to describe patterns of clinical presentation, magnitude of treatment abandonment, and survival in children with sarcoma in Central America. METHODS: A retrospective review was conducted of hospital-based registries from national pediatric oncology referral centers. Patients with newly diagnosed osteosarcoma, Ewing sarcoma, rhabdomyosarcoma (RMS), and soft tissue sarcoma (STS) between January 1, 2000 and December 31, 2009 were included. Survival analyses were performed first using standard definitions of overall survival (OS) and event-free survival (EFS) and then with abandonment included as an event (abandonment-sensitive OS and abandonment-sensitive EFS). RESULTS: In total, 785 new cases of pediatric sarcoma were reported (264 diagnoses of osteosarcoma, 175 diagnoses of Ewing sarcoma, 240 diagnoses of RMS, and 106 diagnoses of STS). The rate of metastatic disease at presentation was high (osteosarcoma, 38%; Ewing sarcoma, 39%; RMS, 29%; and STS, 21%). The treatment abandonment rate also was high, particularly among patients with extremity bone sarcomas (osteosarcoma, 30%; Ewing sarcoma, 15%; RMS, 25%; and STS, 15%). Of 559 patients who experienced a first event, 59% had either recurrent or progressive disease. The 4-year OS rate (±standard error) was 40% ± 3%, and the EFS rate was 30% ± 2%; however, these rates decreased further to 31% ± 2% and 24% ± 2%, respectively, when abandonment was taken into account. CONCLUSIONS: The current results indicated that high rates of metastases and treatment abandonment and difficulty with upfront treatment effectiveness are important contributors to the poor survival of children with pediatric sarcomas in Central America. Initiatives for early diagnosis, psychosocial support, quality improvement, and multidisciplinary care are warranted to improve outcomes.

Nutritional status at diagnosis is related to clinical outcomes in children and adolescents with cancer: a perspective from Central America.

BACKGROUND: The prevalence of malnutrition in children may exceed 50% in countries with limited resources. The aims of this study were to assess nutritional status at diagnosis in children and adolescents with cancer, and to correlate it with clinical outcomes in the Spanish speaking countries of Central America that formed the AHOPCA (Asociacion de Hemato-Oncologia Pediatrica de Centro America) consortium. METHODS: Patients aged 1-18 years, diagnosed with cancer between 1st October 2004 and 30th September 2007, were eligible for study. Weight (kg) and height or length (m), mid upper arm circumference--MUAC and triceps skin fold thickness--TSFT were measured and their Z-scores or percentiles were calculated. Three categories of nutritional status were defined according to these parameters. RESULTS: A total of 2954 new patients were enrolled; 1787 had all anthropometric measurements performed and 1513 also had measurements of serum albumin. By arm anthropometry 322/1787 patients (18%) had moderate nutritional depletion and 813/1787 patients (45%) were severely depleted. Adding serum albumin, the proportion classified as severely depleted rose to 59%. Malnourished children more often abandoned therapy and their event free survival was inferior to that of other children. CONCLUSIONS: Arm anthropometry in children with cancer is a sensitive measure of nutritional status. Since malnutrition at diagnosis was related to important clinical outcomes, an opportunity exists to devise simple, cost-effective nutritional interventions in such children that may enhance their prospects for survival.