Iniciativa mundial contra el cáncer infantil: aumentar el acceso, mejorar la calidad, salvar vidas

As estatísticas globais de câncer são cada vez mais alarmantes: em 2022 houve aproximadamente 20 milhões de novos casos de câncer e 10 milhões de mortes(1). Em particular, em relação ao câncer infantojuvenil, a cada ano cerca de 280.000 crianças e adolescentes de 0 a 19 anos desenvolvem câncer em todo o mundo(2) e, desses, 9 em cada 10 vivem em países de baixa e média renda, onde o tratamento geralmente não está disponível ou é de alto custo(2). Na América Latina e no Caribe, estima-se que pelo menos 29.000 menores de 19 anos desenvolverão câncer a cada ano. Em países de alta renda, mais de 80% das crianças e dos adolescentes com câncer são curados, mas a taxa de cura é de aproximadamente 20% nos países de baixa e média renda(3). As mortes evitáveis por câncer nesta população em países de baixa e média renda estão relacionadas ao subdiagnóstico, ao diagnóstico tardio ou incorreto, às dificuldades de acesso a cuidados de saúde, a doença avançada no estabelecimento do diagnóstico, a falta de acesso a tratamento e cuidados de suporte em centros de referência ou a profissionais de saúde com conhecimento e treinamento especializados. Podem, ainda, ocorrer por abandono do tratamento em decorrência das dificuldades das famílias de assumirem os custos diretos dos cuidados de saúde, morte por toxicidade das drogas e maiores taxas de recorrência. Razões subjacentes para essa disparidade têm sido vinculadas a indicadores dos sistemas de saúde, como gasto nacional anual com saúde per capita, número de médicos e enfermeiras por 1.000 habitantes e capacidade institucional. No que se refere à capacidade institucional, destaca-se o número inadequado de profissionais de saúde qualificados e recursos limitados de cuidados de suporte, por exemplo, medicamentos e hemoderivados(3). Mesmo considerado mais raro quando comparado ao câncer do adulto, o câncer infanto-juvenil também figura como relevante problema de saúde pública(2). Investir em programas de controle do câncer, em particular do câncer infantojuvenil, supera os custos econômicos, pois cada criança ou adolescente que morre prematuramente em decorrência da enfermidade representa uma perda para a família e ameaça à coesão familiar, levando, também, a uma perda social em longo prazo. Além da justificativa econômica, as políticas para o controle do câncer infantojuvenil devem incorporar os princípios da equidade, dos direitos humanos e da justiça social(3-4). Tais princípios estão apoiados na Declaração de Alma-Ata(5) quando ela trata da valorização da vida e da dignidade humana, afirmando que todas as pessoas importam e não podem ser deixadas para trás. A necessidade crucial de equidade nos cuidados oncológicos, independentemente da idade, dos antecedentes sociodemográficos ou do diagnóstico, é a base da justiça social nos serviços de saúde(4). Neste sentido, o local onde uma criança ou adolescente reside não deve determinar se eles sobreviverão ou não ao câncer. Para enfrentar essa profunda desigualdade, a Organização Mundial de Saúde (OMS) e o St. Jude Children’s Research Hospital lançaram, em 2018, a Iniciativa Global da OMS para o Controle de Câncer Infantil, e para atingir o objetivo declarado de aumentar a sobrevida de crianças e adolescentes com câncer para pelo menos 60% até 2030, melhorias no acesso e qualidade de cuidados foram estabelecidas(3). Para tanto, a Iniciativa estabeleceu dois objetivos principais: aumentar a capacidade dos países de fornecer serviços e informações de qualidade e aumentar a prioridade do câncer infantojuvenil em nível global, nacional e regional, a partir do CureAll framework(3). A estrutura CureAll enfatiza a necessidade de cuidados multidisciplinares centrados na família de crianças e adolescentes com câncer. Prevê o desenvolvimento de recursos direcionados aos profissionais de saúde como fundamental para garantir que práticas baseadas em evidências sejam implementadas no cuidado oncológico. Tais recursos, incluindo orientações, cursos de treinamento e relatórios técnicos, fornecem aos profissionais de saúde as ferramentas e informações necessárias para fornecer cuidados de qualidade, adaptados às necessidades de seus pacientes. Inúmeras estratégias têm sido propostas para melhorar a taxa de sobrevivência de crianças e adolescentes com câncer em países de baixa e media renda, incluindo esforços de conscientização da comunidade, atendimento orientado por protocolos cooperativos e atendimento interdisciplinar. A necessidade de enfermeiros oncológicos pediátricos competentes é um aspecto do cuidado universalmente reconhecido como essencial em todas essas estratégias(6). A OMS reconhece os enfermeiros como “clínicos de linha de frente”, essenciais para melhorar o acesso aos cuidados de saúde(7). Neste sentido, educação especializada, quantitativo adequado de pessoal e equipamentos são necessários para apoiar a complexa prática de enfermagem. Os cuidados de enfermagem em oncologia pediátrica requerem um amplo e profundo conhecimento do câncer infantojuvenil e habilidades clínicas avançadas. Hospitais em países de alta renda fornecem educação permanente para enfermeiros de oncologia pediátrica recém-contratados, diferentemente das instituições de saúde dos países de baixa e média renda, onde muitas vezes isso não está disponível. Ademais, em muitos países um plano de carreira profissional para enfermeiros nem sempre está pactuado para regular o papel e as funções do enfermeiro oncológico e, em última instância, o aporte financeiro de acordo com suas competências(6-7). Nesse sentido, a recente obra “Escopo da Prática de Enfermagem Pediátrica Oncológica na América Latina”(8), como parte da CureAll Framework, lançada em janeiro de 2023 pela Organização Pan-Americana da Saúde (OPAS), carrega o ineditismo de reunir e sistematizar as recomendações para apoiar as enfermeiras e os enfermeiros da América Latina e do Caribe no seu ofício de cuidar de crianças e adolescentes com câncer, bem como de suas famílias. A presente obra é destinada a gestores de saúde, gerentes hospitalares, instituições formadoras e para a Enfermagem Oncológica, principalmente enfermeiras e enfermeiros especialistas em Oncologia Pediátrica, com o objetivo de apresentar as Competências Essenciais para a Prática dos Enfermeiros Pediatras Oncológicos da América Latina e do Caribe. As bases teóricas de sustentação para a sistematização das recomendações contidas na presente obra foram o Cuidado Centrado no Paciente e na Família, referencial reconhecido internacionalmente e amplamente utilizado como um arcabouço teórico que possibilita a interlocução entre as diferentes realidades desta prática. A segunda base teórica foi o Caring for Teenagers and Young Adults with Cancer: a Competence and Career Framework for Nursing, elaborado pelo Teenage Cancer Trust/Royal College of Nursing. Esse documento apresenta o processo de construção das competências dos enfermeiros para o cuidado ao adolescente e adulto jovem com câncer, sustentada em seis domínios:1) Cuidados clínicos e de suporte; 2) Educação e pesquisa; 3) Envolvimento e advocacy; 4) Equipe interprofissional e trajetória da criança ou adolescente com câncer e sua família; 5) Liderança e desenvolvimento profissional e 6) Desenvolvimento de políticas e serviços de saúde. As duas bases teóricas estão alinhadas, também, às diretrizes da Aliança Global da OMS para o Controle do Câncer Infantil no que diz respeito à necessidade de centros de excelência e redes de atendimento com equipes interprofissionais especializadas e prática colaborativa. Assim, a educação permanente e o treinamento são peças-chave para aumentar as habilidades, os conhecimentos clínicos, a liderança e a capacidade política dos enfermeiros em oncologia pediátrica. Os profissionais de saúde, especialmente os enfermeiros, educadores e partes interessadas (stakeholders) precisam identificar e incorporar as competências essenciais que determinam o escopo da prática do cuidado seguro e qualificado, a partir de conhecimentos, habilidades e atitudes, características necessárias para a prática profissional eficaz. A identificação dessas competências garante que as profissões de saúde sejam bem definidas, promove forças de trabalho competentes, facilita a avaliação de forma oportuna, autônima e científica por meio de prática baseada em evidência, bem como facilita a mobilidade profissional. A Iniciativa Global é uma política pública que apresenta aos enfermeiros e as enfermeiras da Oncopediatria diretrizes para que eles possam mudar as circunstâncias, onde quer que atuem, para atingir a meta de aumentar a taxa de sobrevida de crianças e adolescentes com câncer nas próximas décadas.The global cancer statistics are increasingly alarming: in 2022 there were approximately 20 million new cancer cases and 10 million deaths(1). In particular, regarding the childhood cancer, nearly 280,000 children and adolescents aged from 0 to 19 years old develop the disease each year in the world(2) and, of them, 9 out of 10 live in low- and middle-income countries, where treatments are generally not available or present high costs(2). In Latin America and the Caribbean, it is estimated that at least 29,000 individuals aged less than 19 years old will develop cancer each year. In high-income countries, more than 80% of the children and adolescents with cancer are cured; however, this rate is approximately 20% in low- and middle-income countries(3). The preventable deaths due to cancer in this population group from low- and middle-income countries are related to underdiagnosis, late or incorrect diagnosis, health care access difficulties, advanced-stage disease at the time of diagnosis, and lack of access to treatments and supportive care in reference centers or to health professionals with specialized knowledge and training. They can also be due to treatment abandonment as a result of the families’ difficulties bearing the direct health care costs, to deaths due to drug toxicities and to higher recurrence rates. Underlying reasons for this disparity have been linked to health system indicators such as annual per capita national expenditure in health, number of physicians and nurses per 1,000 inhabitants and institutional capacity. Regarding the institutional capacity, inadequate staffing of duly qualified health professionals and limited supportive care resources stand out, such as medications and hemoderivatives(3). Even if considered rarer than cancer in adults, it also emerges as a relevant public health issue(2). Investing in cancer control programs, in particular childhood cancer, overcomes the economic costs, as each child or adolescent who dies prematurely due to the disease represents a loss for the family and a threat to family cohesion, also leading to a long-term social loss. In addition to the economic reason, the policies for childhood cancer control might be incorporate the equality, human rights and social justice principles(3-4). Such principles are supported by the Alma-Ata Declaration(5) when it deals with valuing human life and dignity, asserting that all people are important and cannot be left behind. The crucial need for equality in cancer care, regardless of age, sociodemographic background or diagnosis, is the basis for social justice in healthcare services(4). Hence, a child’s or adolescent’s place of residence should be not determine if they will survive cancer or not. In order to face this profound inequality, in 2018 the World Health Organization (WHO) and the St. Jude Children’s Research Hospital launched the WHO Global Initiative for Childhood Cancer Control and, to achieve the objective proposed of increasing survival of children and adolescents with cancer to at least 60% by 2030, a number of improvements in care access and quality were established(3). Thus, the Initiative have defined two main objectives: increasing the countries capability to provide good quality services and information; and increasing the priority of childhood cancer at the global, national and regional levels, based on the CureAll framework(3). The CureAll structure highlights the need for multidisciplinary care centered on the families of children and adolescents with cancer. It is expected that the development of resources targeted at healthcare professionals as a pivotal element to ensure the implementation of evidence-based practices in cancer care. Such resources, including guidelines, training courses and technical reports, provide healthcare professionals with the tools and information required to delivering good quality care adjusted to their patients’ needs. Several strategies have been proposed to improving the survival rate of children and adolescents with cancer in low- and middle-income countries, including efforts to raise awareness in the communities, care guided by cooperative protocols, and interdisciplinary care. The need for competent Pediatric Oncology Nurses is a care component universally recognized as essential in all these strategies(6). The WHO recognizes nurses as “front-line clinicians”, essential to improve healthcare access(7). In this sense, specialized education, adequate staffing and devices in sufficient numbers are necessary to support the complex nursing practice. Pediatric oncology nursing care requires broad and deep knowledge about childhood cancer and advanced clinical skills. In high-income countries, hospitals provide permanent education to recently-hired pediatric oncology nurses, unlike the reality in health institutions from low and middle-income countries, where this is oftentimes not available. In addition, in many countries, nurses’ professional career plans are not always structured to regulate Oncology nurses’ role and functions and, ultimately, financial support according to their competencies(6-7). Hence, the recent technical report entitled “Scope of Pediatric Oncology Nursing Practice in Latin America”(8), as part of the CureAll framework, launched in January 2023 by the Pan American Health Organization (PAHO), carries with it the unprecedented fact of gathering and systematizing the recommendations to support nurses from Latin America and the Caribbean in their duty of caring for children and adolescents with cancer and their families. This technical report is intended for healthcare and hospital managers, for training institutions and for Oncology Nursing, mainly nurses specialized in Pediatric Oncology, with the purpose of presenting the Essential Competencies for the Practice of Pediatric Oncology Nurses in Latin America and the Caribbean. The theoretical grounds to systematize the recommendations comprised in this technical report Patient- and Family-Centered Care, an internationally renowned and widely used framework with a theoretical structure that enables to bond between different realities of this practice. The second theoretical basis was “Caring for Teenagers and Young Adults with Cancer: a Competence and Career Framework for Nursing”, prepared by the Teenage Cancer Trust/Royal College of Nursing. This document presents the process to build nurses’ competencies for the care of adolescents and young adults with cancer, supported by six domains: 1) Clinical and supportive care; 2) Education and research; 3) Involvement and advocacy; 4) Interprofessional team and the itinerary of children and adolescents with cancer and their families; 5) Leadership and professional development; and 6) Development of health policies and services. Both theoretical bases are also in line with the WHO Global Initiative for Childhood Cancer Control guidelines in terms of the need for excellence centers and care networks with specialized interprofessional teams and collaborative practices. Thus, permanent education and training are key elements to enhance Pediatric Oncology nurses’ skills, clinical knowledge, leadership and political capability. Healthcare professionals, especially nurses, educators and stakeholders need to identify and incorporate the essential competencies that determine the scope of a safe and qualified cancer care practice based on knowledge, skills and attitudes, necessary characteristics for an effective professional clinical practice. Identifying these competencies ensures that healthcare professions are well-defined, promotes competent workforces, eases timely, autonomous and scientific assessments through evidence-based practices and eases professional mobility.   The WHO Global Initiative for Childhood Cancer Control is a public policy that presents Pediatric Oncology Nurses with guidelines so that they can change the circumstances where they want to work, in order to achieve the goal of improving the survival rate of children and adolescents with cancer in the next decades.Las estadísticas mundiales sobre el cáncer son cada vez más alarmantes: en el año 2022 hubo aproximadamente 20 millones de nuevos casos de cáncer y 10 millones de muertes(1). En lo que respecta, específicamente, al cáncer infantil, alrededor de 280.000 niños y adolescentes, de 0 a 19 años, desarrollan cáncer en todo el mundo por año(2) y de estos, 9 de cada 10 viven en países de bajos y medianos ingresos, donde el tratamiento generalmente no está disponible o tiene un alto costo(2). En América Latina y el Caribe, se estima que, por año, al menos 29.000 niños menores de 19 años desarrollarán cáncer. En los países de altos ingresos, más del 80% de los niños y adolescentes con cáncer se cura, pero en los países de bajos y medianos ingresos la tasa de curación es de aproximadamente el 20%(3). Las muertes prevenibles por cáncer en la población de países de bajos y medianos ingresos económicos se relacionan con el subdiagnóstico, el diagnóstico tardío o incorrecto, dificultades para acceder a la atención médica, enfermedad avanzada al momento del diagnóstico, falta de acceso al tratamiento y atención de apoyo en centros de referencia o profesionales de la salud con conocimientos y formación especializados. También pueden ocurrir por abandono del tratamiento debido a las dificultades que tienen las familias para asumir los costos directos de la atención sanitaria, muerte por toxicidad farmacológica y mayores tasas de recurrencia. Las razones subyacentes de esta disparidad se han relacionado con indicadores del sistema de salud, como el gasto nacional anual en salud per cápita, el número de médicos y enfermeros por cada 1000 habitantes y la capacidad institucional. En lo que respecta a la capacidad institucional, es evidente que el número de los profesionales de la salud calificados es inadecuado y que los recursos destinados a cuidados de apoyo son limitados, como por ejemplo, los medicamentos y hemoderivados(3). Si bien el cáncer infantil se considera más raro que el cáncer en adultos, también figura como un problema de salud pública relevante(2). Invertir en programas para el control del cáncer, especialmente del cáncer infantil, supera los costos económicos, ya que cada niño o adolescente que muere prematuramente a causa de la enfermedad representa una pérdida para la familia y amenaza la cohesión familiar, que genera también una pérdida para la sociedad a largo plazo. Además de la justificativa económica, las políticas contra el cáncer infantojuvenil deben incorporar los principios de equidad, derechos humanos y justicia social(3-4). Tales principios se basan en la Declaración de Alma-Ata(5) cuando se trata de la apreciación de la vida y la dignidad humana, que afirma que todas las personas importan y no hay que abandonar a nadie. La base de la justicia social en los servicios de salud es la necesidad crucial de equidad en la atención oncológica, independientemente de la edad, antecedentes sociodemográficos o diagnóstico(4). Por lo tanto, el lugar donde reside el niño o adolescente no debe determinar si sobrevivirá o no al cáncer. Para abordar esta profunda desigualdad, la Organización Mundial de la Salud (OMS) y el St. Jude Children’s Research Hospital lanzaron la Iniciativa Mundial de la OMS contra el cáncer infantil en 2018 y para alcanzar el objetivo de aumentar la supervivencia de los niños y adolescentes con cáncer a por lo menos el 60% para 2030, se establecieron mejoras en el acceso y la calidad de la atención(3). Para ello, la Iniciativa estableció dos objetivos principales: aumentar la capacidad de los países para brindar servicios e información de calidad y aumentar la prioridad del cáncer infantojuvenil a nivel mundial, nacional y regional, con base en el CureAll framework(3). El marco CureAll enfatiza que es necesario brindar atención multidisciplinaria centrada en la familia para niños y adolescentes con cáncer. Contempla que es fundamental que se desarrollen recursos dirigidos a los profesionales de la salud para garantizar que se implementen prácticas basadas en la evidencia en la atención del cáncer. Dichos recursos, que incluyen pautas, cursos de capacitación e informes técnicos, proveen a los profesionales de la salud las herramientas y la información necesaria para brindar atención de calidad adaptada a las necesidades de sus pacientes. Se han propuesto numerosas estrategias para mejorar la tasa de supervivencia de niños y adolescentes con cáncer en países de bajos y medianos ingresos, que incluyen esfuerzos de concientización comunitaria, atención guiada por protocolos cooperativos y atención interdisciplinaria. En todas estas estrategias uno de los aspectos que se considera esencial a nivel mundial es que es necesario contar con enfermeros de oncología pediátrica competentes(6). La OMS reconoce que los enfermeros son el “personal de primera línea”, esenciales para mejorar el acceso a la atención de la sa

Early impact of the COVID-19 pandemic on paediatric cancer care in Latin America

Although previous studies have suggested that the complications and mortality rate related to COVID-19 are substantially lower in the paediatric population,1 it is reasonable to consider that children with underlying conditions such as cancer will be at increased risk of severe disease...Fil: Vasquez, Liliana. Universidad de San Martín de Porres; Perú. Organización Panamericana de la Salud; PerúFil: Sampor, Claudia. Fundacion Hospital de Pediatria Professor Dr. Juan P. Garrahan; ArgentinaFil: Villanueva, Gabriela. Fundacion Hospital de Pediatria Professor Dr. Juan P. Garrahan; ArgentinaFil: Maradiegue, Essy. Instituto Nacional de Enfermedades Neoplasicas; PerúFil: Garcia Lombardi, Mercedes. Gobierno de la Ciudad de Buenos Aires. Hospital General de Niños "Ricardo Gutiérrez"; ArgentinaFil: Gomez García, Wendy. Hospital Infantil Dr. Robert Reid Cabral; República DominicanaFil: Moreno, Florencia. Ministerio de Salud. Instituto Nacional del Cáncer; ArgentinaFil: Diaz, Rosdali. Instituto Nacional de Enfermedades Neoplasicas; PerúFil: Cappellano, Andrea M.. Universidade Federal de Sao Paulo; BrasilFil: Portilla, Carlos Andres. Universidad del Valle; ColombiaFil: Salas, Beatriz. Hospital del Niño Manuel Ascencio Villarroel; BoliviaFil: Nava, Evelinda. Hospital de Niños Jesus Garcia Coello; VenezuelaFil: Brizuela, Silvia. Instituto de Previsión Social ; ParaguayFil: Jimenez, Soledad. Hospital Solca Núcleo de Loja; EcuadorFil: Espinoza, Ximena. Hospital de Niños Dr. Roberto del Río; ChileFil: Gassant, Pascale Yola. Hôpital Saint-Damien; HaitíFil: Quintero, Karina. Children's Hospital Dr Jose Renan Esquivel; PanamáFil: Fuentes Alabi, Soad. Hospital Nacional de Niños Benjamin Bloom; El SalvadorFil: Velasquez, Thelma. No especifíca;Fil: Fu, Ligia. Hospital Escuela de Tegucigalpa; HondurasFil: Gamboa, Yessika. National Children's Hospital; Costa RicaFil: Quintana, Juan. Clinica Las Condes; ChileFil: Castiglioni, Mariela. Hospital Pereira Rossell; UruguayFil: Nuñez, Cesar. Children's Cancer Hospital; Estados UnidosFil: Moreno, Arturo. Hospital Universitario de Puebla; MéxicoFil: Luna Fineman, Sandra. State University of Colorado at Boulder; Estados UnidosFil: Luciani, Silvana. Pan American Health Organization; Estados UnidosFil: Chantada, Guillermo Luis. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Gobierno de la Ciudad de Buenos Aires. Hospital de Pediatría "Juan P. Garrahan"; Argentina. Hospital Sant Joan de Deu Barcelona; Españ

Sustainable care for children with cancer: a Lancet Oncology Commission.

We estimate that there will be 13·7 million new cases of childhood cancer globally between 2020 and 2050. At current levels of health system performance (including access and referral), 6·1 million (44·9%) of these children will be undiagnosed. Between 2020 and 2050, 11·1 million children will die from cancer if no additional investments are made to improve access to health-care services or childhood cancer treatment. Of this total, 9·3 million children (84·1%) will be in low-income and lower-middle-income countries. This burden could be vastly reduced with new funding to scale up cost-effective interventions. Simultaneous comprehensive scale-up of interventions could avert 6·2 million deaths in children with cancer in this period, more than half (56·1%) of the total number of deaths otherwise projected. Taking excess mortality risk into consideration, this reduction in the number of deaths is projected to produce a gain of 318 million life-years. In addition, the global lifetime productivity gains of US$2580 billion in 2020-50 would be four times greater than the cumulative treatment costs of$594 billion, producing a net benefit of $1986 billion on the global investment: a net return of$3 for every $1 invested. In sum, the burden of childhood cancer, which has been grossly underestimated in the past, can be effectively diminished to realise massive health and economic benefits and to avert millions of needless deaths

Global Retinoblastoma Presentation and Analysis by National Income Level.

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

The global retinoblastoma outcome study : a prospective, cluster-based analysis of 4064 patients from 149 countries

DATA SHARING : The study data will become available online once all analyses are complete.BACKGROUND : Retinoblastoma is the most common intraocular cancer worldwide. There is some evidence to suggest that major differences exist in treatment outcomes for children with retinoblastoma from different regions, but these differences have not been assessed on a global scale. We aimed to report 3-year outcomes for children with retinoblastoma globally and to investigate factors associated with survival. METHODS : We did a prospective cluster-based analysis of treatment-naive patients with retinoblastoma who were diagnosed between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Patients were recruited from 260 specialised treatment centres worldwide. Data were obtained from participating centres on primary and additional treatments, duration of follow-up, metastasis, eye globe salvage, and survival outcome. We analysed time to death and time to enucleation with Cox regression models. FINDINGS : The cohort included 4064 children from 149 countries. The median age at diagnosis was 23·2 months (IQR 11·0–36·5). Extraocular tumour spread (cT4 of the cTNMH classification) at diagnosis was reported in five (0·8%) of 636 children from high-income countries, 55 (5·4%) of 1027 children from upper-middle-income countries, 342 (19·7%) of 1738 children from lower-middle-income countries, and 196 (42·9%) of 457 children from low-income countries. Enucleation surgery was available for all children and intravenous chemotherapy was available for 4014 (98·8%) of 4064 children. The 3-year survival rate was 99·5% (95% CI 98·8–100·0) for children from high-income countries, 91·2% (89·5–93·0) for children from upper-middle-income countries, 80·3% (78·3–82·3) for children from lower-middle-income countries, and 57·3% (52·1-63·0) for children from low-income countries. On analysis, independent factors for worse survival were residence in low-income countries compared to high-income countries (hazard ratio 16·67; 95% CI 4·76–50·00), cT4 advanced tumour compared to cT1 (8·98; 4·44–18·18), and older age at diagnosis in children up to 3 years (1·38 per year; 1·23–1·56). For children aged 3–7 years, the mortality risk decreased slightly (p=0·0104 for the change in slope). INTERPRETATION : This study, estimated to include approximately half of all new retinoblastoma cases worldwide in 2017, shows profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries estimated 3-year survival is just over 50%. Although essential treatments are available in nearly all countries, early diagnosis and treatment in low-income countries are key to improving survival outcomes.The Queen Elizabeth Diamond Jubilee Trust and the Wellcome Trust.https://www.thelancet.com/journals/langlo/homeam2023Paediatrics and Child Healt

Collaborative effort to catalyze the implementation of the Global Initiative for Childhood Cancer in the Central American subregion

In Central America, childhood cancer is one of the leading causes of death. It is also a significant disease burden to health systems, with social and economic implications for families. The World Health Organization (WHO), the Executive Secretary of the Council of Ministers of Health of Central America and the Dominican Republic (SE-COMISCA), the Pan American Health Organization (PAHO), and St Jude Children’s Research Hospital are working collaboratively to strengthen the health system’s response to childhood cancer in Central America and the Dominican Republic. This collaboration’s primary objective is to support the development of national pediatric cancer plans for each country in the subregion and improve overall survival rates and quality of care for children with cancer through a more comprehensive universal health coverage package. This collaborative effort has led to: (i) the development of childhood cancer national action plans; (ii) the launch of awareness and promotion campaigns; (iii) the design of childhood cancer educational material for children and their families; and (iv) a platform for professionals working in childhood cancer to share good practices and successful experiences. The countries of the subregion together with PAHO and St Jude Children’s Research Hospital are working to develop standardized evidence-based clinical practice guidelines on childhood cancer for the region. This brief communication reports on this collaborative work

Leucemia aguda en recaída pediátrica: quimioterapia con intención curativa mejora la calidad de vida

Objectives. Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child’s physical health, pain or general fatigue and parents’ QoL over time among patients with paediatric leukaemia in El Salvador Methods.. This was a prospective observational cohort study. Children 2–18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and timeMethods.. This was a prospective observational cohort study. Children 2–18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time Results. Of the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child’s physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents’ QoL (estimate=1.0, 95% CI −0.8 to 2.8). Conclusions. Among paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.Objetivos. Los pacientes pediátricos con leucemia con recaída o falla en la inducción tienen mal pronóstico. La calidad de vida (QoL) anticipada es importante en la toma de decisiones de tratamiento. El objetivo fue determinar si la intención curativa en la recaída o el fracaso de la inducción, en comparación con la intención paliativa, se asoció con la salud física, el dolor o la fatiga general del niño y la calidad de vida de los padres a lo largo del tiempo entre los pacientes con leucemia pediátrica en El Salvador. Métodos. un estudio observacional prospectivo de cohortes. Los niños de 2 a 18 años con leucemia aguda en la primera recaída o fracaso de la inducción fueron elegibles. Las evaluaciones se realizaron cada 2 meses durante un máximo de 2 años utilizando escalas validadas de informe de poder y autoinforme, en las que los tutores eran los principales encuestados. Los médicos clasificaron la intención curativa o paliativa inicial en el momento de la inscripción. El impacto de la intención inicial en la calidad de vida se evaluó mediante modelos de efectos mixtos lineales y la interacción entre la calidad de vida y los métodos de tiempo. Este fue un estudio de cohorte observacional prospectivo. Los niños de 2 a 18 años con leucemia aguda en la primera recaída o fracaso de la inducción fueron elegibles. Las evaluaciones se realizaron cada 2 meses durante un máximo de 2 años utilizando escalas validadas de informe de poder y autoinforme, en las que los tutores eran los principales encuestados. Los médicos clasificaron la intención curativa o paliativa inicial en el momento de la inscripción. El impacto de la intención inicial en la calidad de vida se evaluó mediante modelos de efectos mixtos lineales y la interacción entre la calidad de vida y los resultados temporales. De las 60 familias incluidas, la intención de tratamiento inicial fue curativa en 31 (51,7%) y paliativa en 29 (48,3%). Durante el período de observación de 2 años, 44 niños murieron. La intención curativa inicial mejoró significativamente la salud física del niño (estimación = 8,4, IC del 95 %: 5,1 a 11,6), el dolor (estimación = 5,4, IC del 95 %: 1,5 a 9,2) y la fatiga (estimación = 6,6, IC del 95 %: 3,2 a 9,9) en comparación con intención paliativa, pero no la calidad de vida de los padres (estimación = 1,0, IC del 95 %: -0,8 a 2,8). Conclusiones. Entre los pacientes pediátricos con leucemia aguda en el momento de la recaída o el fracaso de la inducción, el plan de tratamiento con intención curativa inicial se asoció con una mejor salud física, dolor y fatiga en comparación con la intención paliativa. Un enfoque curativo puede ser una opción razonable para pacientes con leucemia aguda incluso cuando el pronóstico es malo

El costo y la rentabilidad de la niñez Tratamiento del Cáncer en El Salvador, Centro América: un informe desde el cáncer infantil Red 2030

Background Although previous studies have examined the cost of treating individual childhood cancers in low-income and middle-income countries, to the authors’ knowledge none has examined the overall cost and cost-effectiveness of operating a childhood cancer treatment center. Herein, the authors examined the cost and sources of financing of a pediatric cancer unit in Hospital Nacional de Ninos Benjamin Bloom in El Salvador, and make estimates of cost-effectiveness.Fondo Aunque estudios previos han examinado el costo de tratar cánceres infantiles individuales en familias de ingresos bajos y medianos países, según el conocimiento de los autores, ninguno ha examinado la costo y rentabilidad de operar un tratamiento de cáncer infantil centro. Aquí, los autores examinaron el costo y las fuentes de financiamiento de una unidad oncológica pediátrica en el Hospital Nacional de Niños Benjamin Bloom en El Salvador, y hacer estimaciones de costo-efectivida

Intervenciones dirigidas a las ausencias aumentan la adherencia y reducen el abandono del tratamiento del cáncer infantil en El Salvador

Background. In El Salvador, about 200 new cases of pediatric cancer are diagnosed each year, and survival rates approach 70%. Although treatment is available at no cost, abandonment of therapy has remained at a steady yearly rate of 13% during the past decade. A time sensitive adherence tracking procedure (TS-ATP) was recently implemented to detect missed appointments, identify their causes, and intervene promptly. Procedure The study team was informed daily of patient/family failure to attend medical appointments in the pediatric oncology unit; the families were contacted and interviewed to ascertain and address the reasons. Patients who did not return after this initial contact were contacted again through local health clinics and municipalities. Law enforcement was a last resort for patients undergoing frontline treatment with a good prognosis. The system was adapted to clinical urgency: families of patients undergoing induction therapy were contacted within 24 hr, those in other therapy phases, within 48 hr, and those who had completed treatment, within one week. Reasons for absence were obtained by telephone or in person. Results. The annual rate of abandonment was reduced from 13– 3% during the 2 years period. There were 1,111 absences reported and 1,472 contacts with caregivers and institutions. The three main reasons for absences were financial needs (165, 23%), unforeseen barriers (116, 16%), and domestic needs (86, 12%). Conclusions. Use of the treatment adherence tracking system to locate and communicate with patients/families after missed appointments and the allocated aid stemming from these interviews substantially reduced abandonment and non-adherenceFondo. En El Salvador, cada año se diagnostican alrededor de 200 nuevos casos de cáncer pediátrico y las tasas de supervivencia se acercan al 70%. Aunque el tratamiento está disponible sin costo, el abandono de la terapia se ha mantenido a una tasa anual constante del 13% durante la última década. Recientemente se implementó un procedimiento de seguimiento de la adherencia sensible al tiempo (TS-ATP) para detectar citas perdidas, identificar sus causas e intervenir con prontitud. Procedimiento El equipo de estudio fue informado diariamente de la falta de asistencia del paciente/familiar a las citas médicas en la unidad de oncología pediátrica; las familias fueron contactadas y entrevistadas para determinar y abordar los motivos. Los pacientes que no regresaron después de este contacto inicial fueron contactados nuevamente a través de las clínicas de salud locales y los municipios. La aplicación de la ley era el último recurso para los pacientes que se sometían a un tratamiento de primera línea con un buen pronóstico. El sistema se adaptó a la urgencia clínica: se contactó a las familias de los pacientes en terapia de inducción en 24 h, en otras fases de la terapia en 48 h y con los que habían completado el tratamiento en una semana. Las razones de la ausencia se obtuvieron por teléfono o en persona. Resultados. La tasa anual de abandono se redujo del 13 al 3% durante el período de 2 años. Hubo 1.111 ausencias reportadas y 1.472 contactos con cuidadores e instituciones. Las tres razones principales de las ausencias fueron las necesidades económicas (165, 23 %), las barreras imprevistas (116, 16 %) y las necesidades domésticas (86, 12 %). Conclusiones. El uso del sistema de seguimiento de la adherencia al tratamiento para localizar y comunicarse con los pacientes/familiares después de las citas perdidas y las ayudas asignadas derivadas de estas entrevistas redujeron sustancialmente el abandono y la falta de adherencia

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.Fil: Peña Hernández, Armando. Hospital Escuela Universitario; HondurasFil: Ortiz, Roberta. Children's Hospital Manuel de Jesus Rivera; NicaraguaFil: Garrido, Claudia. Francisco Marroquín Medical School; GuatemalaFil: Gomez Garcia, Wendy. Robert Reid Cabral Children's Hospital; República DominicanaFil: Fuentes Alabi, Soad. Benjamin Bloom Hospital; El SalvadorFil: Martinez, Roxana. Hospital Mario Catarino Rivas; HondurasFil: Metzger, Monika L.. St. Jude Children's Research Hospital; Estados UnidosFil: Chantada, Guillermo Luis. Gobierno de la Ciudad de Buenos Aires. Hospital de Pediatría "Juan P. Garrahan"; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; ArgentinaFil: Ribeiro, Raul C.. St. Jude Children's Research Hospital; Estados Unido