IntroductionNurses comprise the largest group of health workers globally and are essential to the provision of care necessary for delivering curative therapy to children with cancer. In high-income ...countries, previous studies of the nurse workforce have shown an association between patient morbidity and mortality and nursing-related factors such as staffing, education and the nursing practice environment. There is currently limited evidence available to define the scope of essential core competencies for paediatric oncology nursing (PON) practice internationally and specifically in Latin America. Clearly defined essential core competencies contribute to establishing nurses’ scope of practice within clinical practice, education and research settings. Here, we aimed to map and synthesise the available evidence on the scope of PON practices in the context of clinical practice, educational training and research settings in Latin America.MethodsA scoping review (ScR) protocol is reported, adhering to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement and guided by The Joanna Briggs Institute. MEDLINE/PubMed, Cochrane Library, Embase, CINAHL, Web of Science, Scopus, Science Direct and Latin American and Caribbean Health Sciences Literature, plus additional sources: The ProQuest Dissertation & Theses Global, The British Library, Google Scholar, medRXiv, ClinicalTrials.gov and WHO-ICTRP will be searched. No date or language restrictions will be employed. Two independent researchers will conduct all the steps of this ScR. The findings will be presented through tables, charts, narrative summaries and assessed based on the outcomes. The search strategy will be updated in May 2022. The expected completion date for this ScR is November 2022.Ethics/disseminationThis protocol does not require ethical approval. The dissemination plans comprise peer-reviewed publication and conference presentations, to be shared with International Oncology Societies/International Nursing Societies and advisory groups to inform discussions on future research. We expect that our results will be of interest to nurse professionals, especially, PON and nurse scholars concerned with this particular issue.
To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to ...palliative care (PC).
The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts.
The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times.
Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the
online resource.
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.
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.
Preparation for the pandemic throughout Latin America, in terms of hospital capacity, human resources, and testing capacity is, however, heterogeneous.7 In this scenario, there is emerging concern ...about the collateral effect of the COVID-19 pandemic on access to diagnosis and treatment in children with cancer.8 In response to this problem, the global paediatric oncology community has summarised some of the anticipated challenges.9 To examine the potential impact of COVID-19 on the management of children with cancer in Latin America, we did a cross-sectional survey of paediatric onco-haematologists in April 12–19, 2020, early in the spread of the outbreak in the region (appendix p 1). Multivariate logistic regression revealed that the type of oncology hospital, number of paediatric onco-haematologists in a centre, travel restrictions, COVID-19 incidence rate and fatality rate (appendix p 4), and national health-care expenditure were independent factors for any type of discontinuation of or modification to oncological therapy in children (appendix pp 5–6). Almost all participants (99%) reported that their hospitals are implementing social distancing measures, suspension of functions of non-essential personnel and students, reorganisation of teams to reduce exposure, and implementation of educational materials that are aligned to recently published international recommendations (appendix p 7).10 However, some participants expressed concerns about the lack of governance of health-care systems overwhelmed with COVID-19, poor availability of personal protective equipment, issues in the shipment and processing of pathology samples (by flow cytometry and for minimal residual disease assessment), and delays in access to diagnosis in new cases, mostly in countries where treatment is centralised (appendix p 7).
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.
Working with PAHO/WHO to prioritize childhood cancer in the context of systems strengthening is central to St. Jude Children's Research Hospital (SJCRH)'s role as WHO Collaborating Centre for ...Childhood Cancer. This manuscript focuses on how SJCRH and PAHO/WHO have partnered to apply C5 (Country Collaboration for Childhood Cancer Control) to define and implement priority actions regionally, strengthening Ministry programs for childhood cancer, while implementing the Global Initiative for Childhood Cancer since 2018. Using C5, a tool developed by SJCRH, PAHO/WHO and SJCRH co-hosted regional/national workshops engaging authorities, clinicians and other stakeholders across 10 countries to map health systems needs and prioritize strategic activities (spanning Central America, Dominican Republic, Haiti, Brazil and Uruguay). SJCRH provided English/Spanish/Portuguese C5 versions/templates for analysis/prioritization exercises, and worked with PAHO/WHO and country teams to implement C5, analyze findings, and develop outputs. In an eight-country regional workshop, countries defined priorities within national/regional initiatives and ranked their value and political will, incorporating country-specific surveys and stakeholder dialogues. Each country prioritized one strategic activity for 2022-2023, exchanged insights via storytelling, and disseminated and applied results to inform country-specific and regional action plans. National workshops analyses have been incorporated into cancer control planning activities and collaborative work regionally. Implementation success factors include engaging actors beyond the clinic, enabling flexibility, and focusing on co-design with stakeholders. Joint implementation of C5 catalyzed prioritization and accelerated strategic activities to improve policies, capacity, and quality of care for children in the Americas, supporting Ministries to integrate childhood cancer interventions as part of systems strengthening. Keywords Cancer; health policy; health planning, health priorities; public health systems research; national health programs; child advocacy; adolescent health. La colaboracion con la OPS/OMS para priorizar el cancer infantil en el contexto del fortalecimiento de los sistemas es fundamental para la labor del St. Jude Children's Research Hospital (SJCRH) como centro colaborador de la OMS contra el cancer infantil. Este articulo se centra en la alianza entre el SJCRH y la OPS/OMS en la aplicacion de la herramienta C5 (colaboracion nacional para el control del cancer infantil) para definir y ejecutar medidas prioritarias a nivel regional, fortalecer los programas contra el cancer infantil del ministerio y poner en marcha la Iniciativa Mundial contra el Cancer Infantil desde el 2018. Con C5, una herramienta elaborada por el SJCRH, la OPS/OMS y este hospital organizaron conjuntamente talleres regionales y nacionales con autoridades, personal medico y otras partes interesadas en diez paises para determinar cuales son las necesidades de los sistemas de salud y priorizar las actividades estrategicas (en America Central, Republica Dominicana, Haiti, Brasil y Uruguay). El SJCRH proporciono versiones y plantillas de C5 en ingles, espanol y portugues para actividades de analisis y priorizacion y trabajo con la OPS/OMS y los equipos de pais para ejecutar la herramienta C5, analizar los resultados y elaborar productos. En un taller regional de ocho paises, se definieron las prioridades en las iniciativas regionales y nacionales, se clasifico su valor y la voluntad politica y se incorporaron encuestas especificas para cada pais y dialogos con las partes interesadas. Cada pais priorizo una actividad estrategica para el periodo 2022-2023, intercambio ideas por medio de narrativas, y difundio y aplico los resultados para fundamentar planes de accion tanto regionales como especificos para el pais. Los analisis de los talleres nacionales se han incorporado a las actividades de planificacion del control del cancer y al trabajo colaborativo a nivel regional. Entre los factores de exito de la ejecucion se encuentra involucrar a los agentes mas alla de lo clinico, permitir que haya flexibilidad y centrarse en un diseno elaborado en colaboracion con las partes interesadas. La ejecucion conjunta de la herramienta C5 catalizo la priorizacion y acelero las actividades estrategicas para mejorar las politicas, la capacidad y la calidad de la atencion infantil en la Region de las Americas y brindo apoyo a los ministerios para integrar las intervenciones contra el cancer infantil en el fortalecimiento de los sistemas. Palabras clave Cancer; politica de salud; planificacion en salud; prioridades en salud; investigacion en sistemas de salud publica; programas nacionales de salud; defensa del nino; salud del adolescente. A colaboracao com a OPAS/OMS para priorizar o cancer infantil no contexto do fortalecimento dos sistemas e fundamental para o papel do St. Jude Children's Research Hospital (SJCRH) como Centro Colaborador da OMS para o Cancer Infantil. Este artigo mostra como o SJCRH e a OPAS/OMS se associaram para aplicar a ferramenta C5 (Colaboracao Nacional para Controle do Cancer Infantil), com o proposito de definir e implementar acoes prioritarias regionalmente, fortalecendo programas ministeriais para o cancer na infancia, durante a implementacao da Iniciativa Global para o Cancer Infantil desde 2018. Com auxilio da C5, uma ferramenta desenvolvida pelo SJCRH, a OPAS/OMS e o SJCRH organizaram conjuntamente oficinas regionais/nacionais com a participacao de autoridades, profissionais de saude e outras partes interessadas em 10 paises, com a finalidade de mapear as necessidades dos sistemas de saude e priorizar atividades estrategicas (abrangendo America Central, Republica Dominicana, Haiti, Brasil e Uruguai). O SJCRH forneceu versoes/modelos da C5 em ingles, espanhol e portugues para exercicios de analise/priorizacao e colaborou com a OPAS/OMS e as equipes dos paises para implementar a C5, analisar resultados e desenvolver produtos. Em uma oficina regional com oito paises, foram definidas as prioridades das iniciativas nacionais/regionais e classificados seu valor e vontade politica, incorporando levantamentos nacionais e dialogos entre as partes interessadas. Cada pais priorizou uma atividade estrategica para 2022-2023, trocou conhecimentos por meio da narracao de historias e disseminou e aplicou os resultados para informar planos de acao nacionais e regionais. As analises das oficinas nacionais foram incorporadas as atividades de planejamento para controle do cancer e ao trabalho conjunto no ambito regional. Entre os fatores de exito da implementacao estao o engajamento de agentes de fora do segmento da saude, a oferta de flexibilidade e a enfase no planejamento conjunto com as partes interessadas. A implementacao conjunta da C5 catalisou a priorizacao e acelerou atividades estrategicas para aprimorar as politicas, a capacidade e a qualidade da atencao as criancas nas Americas, apoiando os ministerios na integracao das intervencoes contra o cancer infantil como parte do fortalecimento dos sistemas. Palavras-chave Cancer; politica de saude; planejamento em saude; prioridades em saude; pesquisa em sistemas de saude publica; programas nacionais de saude; defesa da crianca e do adolescente; saude do adolescente
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