ABSTRACT

The Global Initiative for Childhood Cancer (GICC) aims to increase the cure rate for children with cancer globally by improving healthcare access and quality. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital (St. Jude), and collaborators have joined efforts to improve outcomes of children with cancer in Latin America and the Caribbean (LAC) using the CureAll framework. In this article, we describe the process of developing regional resources aimed at accelerating the GICC implementation in LAC.

In March 2021, PAHO formed regional working groups to develop core projects aligned with CureAll pillars and enablers. Seven working groups emerged from regional dialogues: early detection, nursing, psychosocial, nutrition, supportive care, treatment abandonment, and palliative care. PAHO arranged regular online meetings under the mentorship and support of St. Jude regional/transversal programs and international mentors.

Between April and December 2021, 202 multidisciplinary experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots, four technical documents, two virtual courses, one set of epidemiological country profiles, one educational content series for parents/caregivers, and two communication campaigns.

The ongoing dialogue and commitment of PAHO, St. Jude, LAC working committees, and international collaborators are essential foundations to successfully accelerate GICC implementation. This is achievable through the development of materials of regional and global relevance. Further research and evaluation are needed to determine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

Keywords
Neoplasms; child health; intersectoral collaboration; health programs and plans; Latin America; Caribbean region

RESUMEN

La Iniciativa Mundial contra el Cáncer Infantil tiene como objetivo aumentar a nivel mundial la tasa de curación del cáncer infantil mediante la mejora del acceso a la atención de salud y de su calidad. La Organización Panamericana de la Salud (OPS), el St. Jude Children’s Research Hospital y los colaboradores han aunado esfuerzos para mejorar los resultados en la población infantil con cáncer en América Latina y el Caribe valiéndose del marco CureAll. En este artículo describimos el proceso de elaboración de recursos regionales destinados a acelerar la aplicación de la Iniciativa Mundial en América Latina y el Caribe.

En marzo del 2021, la OPS formó grupos de trabajo regionales para elaborar proyectos básicos que estuvieran en consonancia con los pilares y los elementos facilitadores del CureAll. De los diálogos regionales surgieron siete grupos de trabajo: detección temprana, enfermería, aspectos psicosociales, nutrición, tratamientos de apoyo, abandono del tratamiento y cuidados paliativos. La OPS organizó con regularidad reuniones virtuales en las que se contó con la tutoría y el apoyo de programas regionales o transversales del St. Jude Children’s Research Hospital y de mentores internacionales.

Entre abril y diciembre del 2021 hubo 43 reuniones virtuales a las que asistieron 202 expertos multidisciplinarios, con el objetivo de promover el diálogo entre las partes interesadas para mejorar los resultados en materia de cáncer infantil. Se elaboraron catorce productos técnicos: cuatro panoramas regionales, cuatro documentos técnicos, dos cursos virtuales, un conjunto de perfiles epidemiológicos de países, una serie con contenidos educativos para padres y cuidadores y dos campañas de comunicación.

El diálogo y el compromiso constantes de la OPS, el St. Jude Children’s Research Hospital, los comités de trabajo de América Latina y el Caribe y los colaboradores internacionales son las bases fundamentales para conseguir que se acelere la aplicación de la Iniciativa Mundial. Esto se puede lograr mediante la elaboración de materiales que resulten pertinentes a nivel regional y mundial. Son necesarias más investigaciones y evaluaciones para determinar el impacto que tienen estas estrategias y recursos en los resultados que se obtienen en el cáncer infantil en América Latina y el Caribe y en otras subregiones.

Palabras clave
Neoplasias; salud infantil; colaboración intersectorial; planes y programas de salud; América Latina; región del Caribe

RESUMO

A Iniciativa Global para o Câncer Infantil tem como objetivo aumentar a taxa de cura de crianças com câncer no mundo todo, melhorando o acesso a cuidados e a qualidade da assistência médica. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital (St. Jude) e colaboradores uniram esforços para melhorar o desfecho de crianças com câncer na América Latina e no Caribe (ALC) no âmbito do marco CureAll. Neste artigo, descrevemos o processo de desenvolvimento de recursos regionais com o objetivo de acelerar a implementação da Iniciativa na ALC.

Em março de 2021, a OPAS formou grupos de trabalho regionais para desenvolver projetos centrais alinhados com os pilares e facilitadores do CureAll. A partir das reuniões de diálogo regionais, foram criados sete grupos de trabalho: detecção precoce, enfermagem, atenção psicossocial, nutrição, cuidados de suporte, abandono do tratamento e cuidados paliativos. A OPAS organizou reuniões virtuais regulares sob a orientação e o apoio dos programas regionais e transversais do St. Jude e de mentores internacionais.

Entre abril e dezembro de 2021, 202 especialistas multidisciplinares participaram de 43 reuniões virtuais para promover o diálogo entre as partes interessadas a fim de melhorar os desfechos do câncer infantil. Foram produzidos 14 materiais técnicos: quatro panoramas regionais, quatro documentos técnicos, dois cursos virtuais, um conjunto de perfis epidemiológicos nacionais, uma série de conteúdo educacional para pais e cuidadores e duas campanhas de comunicação.

O diálogo e o compromisso contínuos da OPAS, do St. Jude, dos comitês de trabalho da ALC e dos colaboradores internacionais são bases essenciais para acelerar com sucesso a implementação da Iniciativa Global para o Câncer Infantil. Isso é possível por meio do desenvolvimento de materiais de relevância regional e mundial. São necessárias mais pesquisas e avaliações para determinar o impacto dessas estratégias e recursos nos resultados do câncer infantil na ALC e em outras regiões.

Palavras-chave
Neoplasias; saúde da criança; colaboração intersetorial; planos e programas de saúde; América Latina; região do Caribe

In Latin America and the Caribbean (LAC), more than 29 000 children and adolescents below the age of 19 are affected by cancer each year, and around 10 000 deaths are attributable to this condition (¹1. Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021 May;71(3):209–249. https://doi.org/10.3322/caac.21660.
https://doi.org/10.3322/caac.21660... ). While childhood cancer survival has improved in the United States of America and other high-income countries to approximately 85% in recent decades (²2. Siegel RL, Miller KD, Wagle NS, Jemal A. Cancer statistics, 2023. CA Cancer J Clin. 2023 Jan;73(1):17–48. https://doi.org/10.3322/caac.21763.
https://doi.org/10.3322/caac.21763... , ³3. Kinsey SE, Picton SV. Childhood cancer in high resource settings. Cancer Epidemiol. 2021 Apr;71(Pt B):101838. https://doi.org/10.1016/j.canep.2020.101838.
https://doi.org/10.1016/j.canep.2020.101... ), substantial disparities among LAC countries are evident and growing (⁴4. Pan American Health Organization. Childhood Cancer Profiles 2021. Washington, DC: PAHO; 2021 [cited 2023 Feb 28]. Available from: https://www.paho.org/en/documents/childhood-cancer-profiles-region-latin-america-and-caribbean.
https://www.paho.org/en/documents/childh... , ⁵5. Ward ZJ, Yeh JM, Bhakta N, Frazier AL, Girardi F, Atun R. Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. Lancet Oncol. 2019 Jul;20(7):972–983. https://doi.org/10.1016/S1470-2045(19)30273-6.
https://doi.org/10.1016/S1470-2045(19)30... ). Avoidable deaths from childhood cancers in low- and middle-income countries (LMIC) result from delayed diagnosis, misdiagnosis, treatment abandonment, malnourishment, toxicity-related fatalities, and inadequate access to effective treatments (⁶6. Rodriguez-Galindo C, Friedrich P, Morrissey L, Frazier L. Global challenges in pediatric oncology. Curr Opin Pediatr. 2013 Feb;25(1):3–15. https://doi.org/10.1097/MOP.0b013e32835c1cbe.
https://doi.org/10.1097/MOP.0b013e32835c... –⁸8. Agulnik A, Cárdenas A, Carrillo AK, Bulsara P, Garza M, Alfonso Carreras Y, et al. EVAT Study Group. Clinical and organizational risk factors for mortality during deterioration events among pediatric oncology patients in Latin America: A multicenter prospective cohort. Cancer. 2021 May 15;127(10):1668–1678. https://doi.org/10.1002/cncr.33411.
https://doi.org/10.1002/cncr.33411... ).

In 2018, the World Health Organization (WHO) launched the Global Initiative for Childhood Cancer (GICC) to increase the cure rate for children with cancer by improving healthcare access and quality. The GICC aims to reach at least a 60% global survival rate for children with cancer by 2030, by bringing together stakeholders across sectors toward a common goal using the CureAll framework in a coordinated operational approach (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ).

The Pan American Health Organization (PAHO), in partnership with St. Jude Children’s Research Hospital (St. Jude) and other partners, is collaborating to improve the prognosis of children with cancer in LAC (¹⁰10. Pan American Health Organization. CureAll Americas. Washington, DC: PAHO; c2023 [cited 2023 Feb 28]. Available from: https://www.paho.org/en/cureall-americas.
https://www.paho.org/en/cureall-americas... ). To accelerate the implementation of the GICC throughout LAC countries, PAHO is developing regional dialogues and resources addressing the leading causes of inadequate care, treatment failure, and death related to childhood cancer. In LMIC, where the burden of the disease is high (representing 80% of all childhood and adolescent cancer globally) (⁵5. Ward ZJ, Yeh JM, Bhakta N, Frazier AL, Girardi F, Atun R. Global childhood cancer survival estimates and priority-setting: a simulation-based analysis. Lancet Oncol. 2019 Jul;20(7):972–983. https://doi.org/10.1016/S1470-2045(19)30273-6.
https://doi.org/10.1016/S1470-2045(19)30... , ⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ), resources for childhood cancer are particularly scarce, and the need for a culturally and regionally sensitive approach in the local language is even greater. In this article, we outline the development, validation, and dissemination of these regional resources, aligned with the CureAll framework of the GICC.

MATERIALS AND METHODS

With the support of multidisciplinary expert working groups comprised of experts from LAC and international advisors, a multi-state approach was used to develop context-appropriate and patient-centered resources on childhood cancer in LAC. The initial approach was made based on methodological principles in five phases (Figure 1).

Project concept and stakeholder engagement

In March 2021, PAHO formed seven regional working groups (early detection, treatment abandonment, nursing, palliative care, nutrition, psychosocial, and supportive care) based on the main factors contributing to childhood cancer treatment failure, suboptimal care, and poor outcomes in LMICs, which include delayed presentation, misdiagnosis, abandonment of treatment, malnutrition, lack of supportive and palliative care, and limited access to curative therapies (⁶6. Rodriguez-Galindo C, Friedrich P, Morrissey L, Frazier L. Global challenges in pediatric oncology. Curr Opin Pediatr. 2013 Feb;25(1):3–15. https://doi.org/10.1097/MOP.0b013e32835c1cbe.
https://doi.org/10.1097/MOP.0b013e32835c... , ⁷7. Lam CG, Howard SC, Bouffet E, Pritchard-Jones K. Science and health for all children with cancer. Science. 2019 Mar 15;363(6432):1182–1186. https://doi.org/10.1126/science.aaw4892.
https://doi.org/10.1126/science.aaw4892... , ¹¹11. Atun R, Bhakta N, Denburg A, Frazier AL, Friedrich P, Gupta S, et al. Sustainable care for children with cancer: a Lancet Oncology Commission. Lancet Oncol. 2020 Apr;21(4):e185–e224. https://doi.org/10.1016/S1470-2045(20)30022-X.
https://doi.org/10.1016/S1470-2045(20)30... ), and aligned them with the CureAll pillars and enablers (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ) (Figure 2). PAHO arranged regular online meetings with the support of St. Jude Global regional and transversal programs, along with international advisors. A concept note was developed outlining the main objectives and activities of the regional work, and five contractors were hired to provide expert technical assistance in specific topics (nutrition, nursing, oral care, psychosocial, and early diagnosis).

Under the coordination of the team from the PAHO Department of Noncommunicable Diseases, the participants of the working groups were convened through national and regional academic societies and partners in LAC. In all, 202 professionals from 21 LAC countries (Argentina, Bolivia [Plurinational State of], Brazil, Chile, Colombia, Costa Rica, Dominican Republic, Ecuador, El Salvador, Guatemala, Haiti, Honduras, Jamaica, Mexico, Nicaragua, Panama, Paraguay, Peru, Trinidad and Tobago, Uruguay, and Venezuela [Bolivarian Republic of]) working in pediatric oncology (pediatric oncologists, nurses, nutritionists, psychologists, social workers, among others) agreed to be part of the working groups to provide their expertise in the development and review of regional materials and resources on childhood cancer. For each interested professional, their resume was reviewed and the declaration of conflict of interest was requested. At least two international advisors were appointed for each of the working groups. They participated in the meetings upon request, and reviewed and monitored the proposals presented.

Needs assessment

The participants of each working group conducted a needs assessment, based on dialogue and consensus. Monthly virtual meetings (90 to 120 minutes each) were established until a consensus was reached and consolidated into a proposal based on potential effectiveness, feasibility, and expected acceptability. During the needs assessment phase, the working groups discussed: 1) the work priorities (in response to the question: What main work priorities are necessary for this topic?) and 2) the opportunities for improvement (in response to the question: How are we going to achieve these work priorities?) (Table 1). The proposals for the resources to be developed were discussed step by step including the materials’ objectives, target audience, content, and indicators of success. A form of communication was established with all the participants involved in the working groups by email, with consistent sharing of each of the meetings’ minutes, agreements, and video recordings.

Development of materials

Regular monthly virtual meetings with the regional working groups were maintained until December 2021 to perform a literature review for each of the materials to be developed. The working groups created a Google Drive cloud folder to collect local resources relevant to each topic, and every participant of each committee had permission to include materials in Spanish, Portuguese, or English. The PAHO cancer team assigned tasks for the members of the committees according to their level of expertise and interest. The proposed materials’ format, content, and target audience were defined during the sessions. A final proposal for each material was presented to the committee for feedback and comments.

Validation and revision

Between January and December 2022, the working groups were reached by email to receive remote access to the draft materials and resources, with permission for editing and commenting. Once the consensus for the final version was established by the committee and the PAHO cancer team, a draft version was sent to the mentors, external collaborators, and experts from the competent units at PAHO and WHO (Mental Health and Substance Use Unit; Family, Health Promotion and Life Course; Nursing and Health Technicians; among others) for technical advice and suggestions. The PAHO cancer team oversaw the systematic incorporation and evaluation of the comments, suggestions, and modifications. A final version was sent to the PAHO editorial publication team for review and subsequent editing and formatting of the materials (including technical documents, virtual courses, communications resources, and others). The materials were circulated among the involved collaborators before publication on the PAHO website and communication channels.

Dissemination and evaluation

The materials were disseminated through national and regional academic societies, PAHO, St. Jude, and partners’ newsletters, websites, social media channels, and conference presentations. Evaluation of the preliminary impact of the regional resources was assessed by indicators according to the type of materials, within the consensus of the working committee.

RESULTS

Between April and December 2021, 202 subject matter experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots (palliative care, abandonment of treatment, early diagnosis, and nutrition), four technical documents (nutrition, oral care, pediatric oncology nursing, and psychosocial care), two virtual courses (early diagnosis and palliative care), one set of childhood cancer country profiles, and communication materials (one set of modules on palliative care and two regional campaigns). Details of the regional resources, including objectives, target audience, content, languages, and indicators are listed in Table 2 and Figure 3. The comprehensive results of the proposed indicators will be presented in a forthcoming publication.

Technical documents

Four regional guidelines and reports on nutrition (Nutritional care guide for pediatric cancer, in Spanish) (¹²12. Pan American Health Organization. Guía de atención nutricional para el cáncer pediátrico. Washington, DC: PAHO; 2022. Available from: https://www.paho.org/es/documentos/guia-atencion-nutricional-para-cancer-pediatrico.
https://www.paho.org/es/documentos/guia-... ), oral care (Oral care manual for pediatric cancer patients, in Spanish) (¹³13. Pan American Health Organization. Manual de cuidados orales para pacientes pediátricos con cancer. Washington, DC: PAHO; 2023. Available from: https://iris.paho.org/handle/10665.2/57129.
https://iris.paho.org/handle/10665.2/571... ), pediatric oncology nursing (The practice of pediatric oncology nursing in LAC, in Spanish) (¹⁴14. Pan American Health Organization. La práctica de la enfermería oncológica pediátrica en América Latina y el Caribe. Washington, DC: PAHO; 2023. Available from: https://iris.paho.org/handle/10665.2/57029.
https://iris.paho.org/handle/10665.2/570... ), and psychosocial care (Standards of psychosocial care in pediatric oncology, in Spanish) (¹⁵15. Pan American Health Organization. Atención Psicosocial del cáncer pediátrico. Washington, DC: PAHO; 2022. Available from: https://www.paho.org/es/tag/atencion-psicosocial-cancer-pediatrico.
https://www.paho.org/es/tag/atencion-psi... ) were developed and refined during several meetings of the working groups and in email discussions with the mentors and collaborators. These evidence-based technical documents are addressed to the multidisciplinary pediatric cancer care team, which includes medical, nutrition, and nursing staff, among other professionals. By February 2023, these technical documents had been collectively downloaded at least 7 379 times. One regional guideline on early diagnosis of childhood cancer (Pocket manual/atlas for the early diagnosis of cancer in children and adolescents, in Spanish) is still in the development phase and is planned to be launched in early 2024.

Virtual courses

Two regional self-study, freely available virtual courses (Virtual Course on Early Diagnosis of Cancer in Childhood and Adolescence [¹⁶16. Pan American Health Organization. Virtual Course on Early Diagnosis of Cancer in Childhood and Adolescence. Washington, DC: PAHO; 2021. Available from: https://www.campusvirtualsp.org/en/course/virtual-course-early-diagnosis-childhood-cancer-2021.
https://www.campusvirtualsp.org/en/cours... ], in Spanish, Portuguese, and English; and Palliative Care in Pediatric Cancer [¹⁷17. Pan American Health Organization. Virtual Course on Palliative Care in Pediatric Cancer. Washington, DC: PAHO; 2023. Available from: https://www.campusvirtualsp.org/es/curso/cuidados-paliativos-en-cancer-pediatrico.
https://www.campusvirtualsp.org/es/curso... ], in Spanish) were developed and launched by the PAHO Virtual Campus for Public Health, with the support of the working committees, St. Jude Global Transversal Programs, and international partners. These courses are open to healthcare providers (physicians, nurses, and other professionals) and may be valuable tools for healthcare professionals who are seeking to improve their knowledge and skills in the early detection of childhood cancer and providing palliative care to children with cancer. By February 2023, there are at least 77 357 participants (55 549 already completed and certified) in the early diagnosis course, and 8 967 participants (3 877 already completed and certified) in the palliative care course. Two regional virtual courses (Pediatric oncology support, and Pediatric cancer psychosocial care, in Spanish) are still in the development phase, with their launch planned in late 2023.

Regional snapshots

Four childhood cancer situation assessments in LAC (Early diagnosis in pediatric oncology [¹⁸18. Pan American Health Organization. Diagnóstico oportuno en oncología pediátrica: Situación en América Latina y el Caribe. Washington, DC: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/56385.
https://iris.paho.org/handle/10665.2/563... ], Abandonment of treatment in pediatric oncology [¹⁹19. Pan American Health Organization. Abandono del tratamiento en oncología pediátrica: Situación en América Latina y el Caribe. Washington, DC: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/56412.
https://iris.paho.org/handle/10665.2/564... ], Nutrition in pediatric oncology [²⁰20. Pan American Health Organization. Nutrición en oncología pediátrica: Situación en América Latina y el Caribe. Washington, DC: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/56411.
https://iris.paho.org/handle/10665.2/564... ], and Palliative care in pediatric oncology [²¹21. Pan American Health Organization. Cuidados paliativos en oncología pediátrica: Situación en América Latina y el Caribe. Washington, DC: PAHO; 2022. Available from: https://iris.paho.org/handle/10665.2/56428.
https://iris.paho.org/handle/10665.2/564... ], in Spanish) were prepared to provide an in-depth analysis of the current state of these relevant issues in pediatric oncology in LAC. The documents discuss the challenges faced by healthcare providers in delivering high-quality early detection, palliative care, and nutritional care, and preventing abandonment of treatment, including lack of resources, limited access to specialized training, limited access to diagnostic technologies, and cultural barriers that may delay seeking and completing medical attention. The documents highlight the need for action to address these issues and provide recommendations for policymakers, health professionals, and other stakeholders to improve health outcomes in the region. By February 2023, these regional snapshots have been downloaded at least 1 073 times.

Childhood cancer country profiles

The Childhood Cancer Profiles (⁴4. Pan American Health Organization. Childhood Cancer Profiles 2021. Washington, DC: PAHO; 2021 [cited 2023 Feb 28]. Available from: https://www.paho.org/en/documents/childhood-cancer-profiles-region-latin-america-and-caribbean.
https://www.paho.org/en/documents/childh... ) for the Region of the Americas were developed to provide a comprehensive overview of childhood cancer care in the region and also in subregions and each LAC country. The profiles include a set of indicators that measure progress toward the goals of the GICC. These indicators are organized into four sections: burden of childhood cancer; survival and cancer registration; health system response for childhood cancers; and palliative care capacity. The burden of childhood cancer section includes indicators such as the number of new cases, deaths, and proportions for the six prioritized pediatric cancers in the WHO GICC (acute lymphoblastic leukemia, Burkitt’s lymphoma, Hodgkin’s lymphoma, retinoblastoma, Wilms tumor, and low-grade glioma). The survival and cancer registration section includes indicators such as net survival rates for these cancers and information related to pediatric cancer registries. The health system response section includes indicators such as providing essential medicines and technologies for childhood cancer treatment, specialized centers, and universal health coverage. Finally, the palliative care capacity section includes indicators such as the availability of pediatric palliative care teams. In Latin America and the Caribbean, 32 countries were included in this analysis. The data sources vary by indicator using the latest available year and are presented in each country’s profile. The profiles serve as a valuable tool for identifying gaps and opportunities for improvement in childhood cancer care across the region. In addition, the information in these profiles can serve as a baseline to assess specific needs and results obtained on regional collaboration efforts, accelerating progress toward improving outcomes for children with cancer.

Materials for parents and caregivers

PAHO, St. Jude Global Palliative Care Program, Together by St. Jude™ program (²²22. St. Jude Children’s Research Hospital. Together by St. Jude™. Memphis: St. Jude; c2023. Available from: https://together.stjude.org/en-us/.
https://together.stjude.org/en-us/... ), and the LAC working group on palliative care developed a comprehensive guide for families of children treated for cancer, on the delivery of palliative care (Quality of Life Series for Children with Cancer: Modules on Pediatric Palliative Care (²³23. Pan American Health Organization. Quality of Life Series for Children with Cancer: Modules on Pediatric Palliative Care. Washington, DC: PAHO; 2021. Available from: https://www.paho.org/es/modulos-sobre-cuidados-paliativos-pediatricos.
https://www.paho.org/es/modulos-sobre-cu... ), in Spanish and Portuguese). The guide consists of eight modules that cover a range of topics related to palliative care and quality of life, including symptom management, communication with patients and families, and considerations during end-of-life care. The resource is designed to be accessible and easy to use for parents and caregivers, with each module consisting of essential information to provide high-quality care to pediatric cancer patients and their families. To February 2023, these materials have been downloaded at least 2 825 times. Details about this resource will be presented in another article in this special supplement on childhood cancer. Additional regional educational material aiming to address treatment adherence (Emely’s suitcase, in Spanish) is still in the development phase, with its launch planned in late 2023.

Regional communication campaigns

Two regional childhood cancer campaigns were developed and jointly launched by PAHO, Childhood Cancer International, and the Together by St. Jude™ program. In February 2022, a communication campaign to address the refusal of treatment in patients with two of the most common types of childhood cancers – retinoblastoma and osteosarcoma – was launched in three countries in the region where the abandonment of treatment is a determining factor in achieving the cure of children with cancer (Bolivia, Haiti, and Peru). In these countries, nearly one-third of the cases of treatment abandonment in patients diagnosed with retinoblastoma and bone sarcomas are due to refusal of treatment at the time of the indication for amputation or enucleation, mainly due to parents’ fear of the consequences of the treatment and mistrust in the health system. Audiovisual materials were developed in Spanish, English, French, and Creole. Additionally, on 15 February 2023, an important campaign to raise awareness of childhood cancer and to improve access to high-quality care for children with cancer in the region was launched. The campaign aims to raise awareness among the general population about childhood cancer’s signs and symptoms, promote early detection and diagnosis, and advocate for greater investment in research and treatment. Materials are available in Spanish and English (¹⁰10. Pan American Health Organization. CureAll Americas. Washington, DC: PAHO; c2023 [cited 2023 Feb 28]. Available from: https://www.paho.org/en/cureall-americas.
https://www.paho.org/en/cureall-americas... ). During the launch month, the campaign videos were seen more than 11 916 times.

DISCUSSION

This report highlights the crucial role of ongoing dialogue and commitment from PAHO, St. Jude, LAC working committees, and international collaborators in accelerating the implementation of the GICC. Through this example of collaboration, several resources of regional relevance have been appropriately developed, validated, and disseminated in the cultural context and main local languages of LAC (Spanish and Portuguese). The goal of the GICC is to strengthen health systems by improving the response capacity of PAHO/WHO Member States (⁸8. Agulnik A, Cárdenas A, Carrillo AK, Bulsara P, Garza M, Alfonso Carreras Y, et al. EVAT Study Group. Clinical and organizational risk factors for mortality during deterioration events among pediatric oncology patients in Latin America: A multicenter prospective cohort. Cancer. 2021 May 15;127(10):1668–1678. https://doi.org/10.1002/cncr.33411.
https://doi.org/10.1002/cncr.33411... ), including strategies to address the main contributors of morbidity and mortality in childhood cancer, including delayed diagnosis, treatment abandonment, malnutrition, suboptimal support, nursing, psychosocial and palliative care, among others (⁶6. Rodriguez-Galindo C, Friedrich P, Morrissey L, Frazier L. Global challenges in pediatric oncology. Curr Opin Pediatr. 2013 Feb;25(1):3–15. https://doi.org/10.1097/MOP.0b013e32835c1cbe.
https://doi.org/10.1097/MOP.0b013e32835c... , ⁷7. Lam CG, Howard SC, Bouffet E, Pritchard-Jones K. Science and health for all children with cancer. Science. 2019 Mar 15;363(6432):1182–1186. https://doi.org/10.1126/science.aaw4892.
https://doi.org/10.1126/science.aaw4892... , ¹⁰10. Pan American Health Organization. CureAll Americas. Washington, DC: PAHO; c2023 [cited 2023 Feb 28]. Available from: https://www.paho.org/en/cureall-americas.
https://www.paho.org/en/cureall-americas... ). Currently, 17 governments in LAC (Argentina, Bolivia [Plurinational State of], Brazil, Chile, Colombia, Costa Rica, Dominican Republic, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, and, Suriname) are collaborating with PAHO and St. Jude in the implementation of the CureAll framework to reach the common objective of improving childhood cancer survival (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ).

The results of this study also demonstrate the importance of a collaborative and multidisciplinary approach to the implementation of the GICC. The CureAll framework emphasizes the need for multidisciplinary and family-centered care for children with cancer (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ). The LAC working groups have embraced this approach and have brought together healthcare professionals, policymakers, and other stakeholders to work toward a common goal. Several important models of collaboration have facilitated the development of resources and interventions reflecting the diverse engagement and expertise of the stakeholders involved, which can lead to more efficient and effective healthcare delivery (²⁴24. Agulnik A, Gonzalez Ruiz A, Muniz-Talavera H, Carrillo AK, Cárdenas A, Puerto-Torres MF, et al. Escala de Valoración de Alerta Temprana (EVAT) Study Group. Model for regional collaboration: Successful strategy to implement a pediatric early warning system in 36 pediatric oncology centers in Latin America. Cancer. 2022 Nov 15;128(22):4004–4016. https://doi.org/10.1002/cncr.34427.
https://doi.org/10.1002/cncr.34427... –²⁶26. Caniza MA, Homsi MR, Vázquez M, Gutierrez IF, Kopsidas I, Mukkada S, et al. The PRINCIPAL Network: A Model to Optimize Infection Care and Prevention in Pediatric Oncology in the Latin American Region. JCO Glob Oncol. 2022 Nov;8:e2200187. https://doi.org/10.1200/GO.22.00187.
https://doi.org/10.1200/GO.22.00187... ). Collaboration also enables the sharing of best practices and the development of standardized approaches to healthcare interventions which must be prioritized in public health, particularly in resource-limited settings (²⁷27. Kruger M, Hendricks M, Davidson A, Stefan CD, van Eyssen AL, Uys R, et al. Childhood cancer in Africa. Pediatr Blood Cancer. 2014 Apr;61(4):587–592. https://doi.org/10.1002/pbc.24845.
https://doi.org/10.1002/pbc.24845... ). Furthermore, the GICC can maximize the utilization of existing resources and enhance the efficiency of its interventions (²⁸28. St. Jude Progress. Latin American clinicians attend global medicine course. Memphis: St. Jude; 2017. Available from: https://blogs.stjude.org/progress/latin-american-clinicians-global-pediatric-medicine.html.
https://blogs.stjude.org/progress/latin-... ). This would ultimately contribute to the sustainability and scalability of the initiative in the region.

Political priority is a critical factor in the scale-up of childhood cancer care, and advocacy efforts targeting policymakers are crucial to increasing visibility (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ). Local government authorities and policymakers have the power to allocate resources, set priorities, and develop policies and programs that can have a significant impact on the delivery of healthcare services. Effective advocacy efforts targeting policymakers including building alliances with key stakeholders, developing regional and national situation analysis and discussions, leveraging existing policies and programs, and utilizing media and other communication channels to raise awareness can increase political will, which in turn can lead to increased funding, improved policies and programs, and better outcomes for children with cancer. Global, regional, and national studies regarding factors contributing to childhood cancer outcomes in LMICs, such as delayed diagnosis (²⁹29. Zabih W, Thota AB, Mbah G, Freccero P, Gupta S, Denburg AE. Interventions to improve early detection of childhood cancer in low- and middle-income countries: A systematic review. Pediatr Blood Cancer. 2020 Dec;67(12):e28761. https://doi.org/10.1002/pbc.28761.
https://doi.org/10.1002/pbc.28761... ), treatment refusal and abandonment (³⁰30. Friedrich P, Lam CG, Itriago E, Perez R, Ribeiro RC, Arora RS. Magnitude of Treatment Abandonment in Childhood Cancer. PLoS One. 2015 Sep 30;10(9):e0135230. https://doi.org/10.1371/journal.pone.0135230.
https://doi.org/10.1371/journal.pone.013... ), malnutrition (³¹31. Joffe L, Ladas EJ. Nutrition during childhood cancer treatment: current understanding and a path for future research. Lancet Child Adolesc Health. 2020 Jun;4(6):465–475. https://doi.org/10.1016/S2352-4642(19)30407-9.
https://doi.org/10.1016/S2352-4642(19)30... ), nurse staffing (³²32. Assaye AM, Wiechula R, Schultz TJ, Feo R. Impact of nurse staffing on patient and nurse workforce outcomes in acute care settings in low-and middle-income countries: a systematic review. JBI Evid Synth. 2021 Apr 1;19(4):751–793.), and lack of supportive therapies and palliative care (³³33. Baker JN, Hinds PS, Spunt SL, Barfield RC, Allen C, Powell BC, et al. Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr Clin North Am. 2008 Feb;55(1):223–250, xii. https://doi.org/10.1016/j.pcl.2007.10.011.
https://doi.org/10.1016/j.pcl.2007.10.01... ) are essential to provide critical information on the challenges facing children with cancer in these settings. Policymakers need to be aware of these factors and their impact on childhood cancer outcomes to develop effective policies and programs to address them. For example, policies aimed at improving early diagnosis and treatment could help reduce delayed presentation, while interventions aimed at improving access to nutrition and supportive care could help improve treatment-associated mortality. Likewise, information from the childhood cancer profiles and recommendations from regional and national reports and snapshots can help policymakers identify areas where resources should be focused to have the greatest impact on childhood cancer outcomes.

The development of resources targeted toward healthcare professionals is crucial to ensure that evidence-based practices are being implemented in the care of children with cancer. Such resources, including guidelines, training courses, and technical reports, provide healthcare professionals with the necessary tools and information to provide effective and efficient care that is tailored to the needs of their patients (⁹9. World Health Organization. CureAll framework: WHO Global Initiative for Childhood Cancer. Increasing access, advancing quality, saving lives. Geneva: WHO; 2021. https://apps.who.int/iris/handle/10665/347370.
https://apps.who.int/iris/handle/10665/3... ). The local context plays a significant role in the delivery of care. Therefore, these resources must be adapted to the specific needs of each community. The importance of developing and disseminating these resources cannot be overstated, as they play a critical role in advancing the field of childhood cancer care and improving the quality of life of children and their families.

Finally, educational and communication materials that aim to raise awareness and improve knowledge among parents, caregivers, and families of children affected by cancer are essential. Providing parents with evidence-based information and resources can improve their knowledge and skills, leading to better clinical outcomes for children with cancer. It can also help reduce stress and anxiety and improve the emotional well-being of caregivers (³⁴34. De la Maza V, Manriquez M, Castro M, Viveros P, Fernandez M, Vogel E, et al. Impact of a structured educational programme for caregivers of children with cancer on parental knowledge of the disease and paediatric clinical outcomes during the first year of treatment. Eur J Cancer Care (Engl). 2020 Nov;29(6):e13294. https://doi.org/10.1111/ecc.13294.
https://doi.org/10.1111/ecc.13294... ).

It is important to note that the resources developed by the LAC working groups are not only relevant to the LAC region but also potentially applicable in other contexts. The content of these resources and the methodology used for their development might be useful in other contexts to be subsequently adapted at a local or national level. This highlights the potential for collaboration and knowledge sharing between different regions and countries to improve childhood cancer outcomes globally. Also, sustainability is a crucial factor in ensuring the success of interventions aimed at improving childhood cancer care in LAC. While implementation is an important step, efforts must be made to sustain these interventions over time to ensure their continued impact on the health outcomes of children with cancer. This requires a long-term commitment from policymakers and other stakeholders to allocate resources and develop policies and programs that support the ongoing delivery of healthcare services. By prioritizing sustainability, we can ensure that the progress made in improving childhood cancer care in LAC is not only implemented but sustained over time, leading to improved outcomes for children with cancer and their families (³⁵35. Agulnik A, Schmidt-Grimminger G, Ferrara G, Puerto-Torres M, Gillipelli SR, Elish P, et al. Challenges to sustainability of pediatric early warning systems (PEWS) in low-resource hospitals in Latin America. Front Health Serv. 2022 Oct 31;2:1004805. https://doi.org/10.3389/frhs.2022.1004805.
https://doi.org/10.3389/frhs.2022.100480... ).

Within the limitations of this study, it is important to mention that, even though the methodology of this study was prospective, it is difficult to assess whether there are better alternatives for the development of these types of materials. Moreover, the resources included in this publication have been developed according to a local context, but the applicability and diffusion in certain specific populations, such as native language contexts, must be considered and must be described for a more exhaustive evaluation. Finally, although a potential list of strategies to measure the impact of the developed resources is proposed in this study, a combination of these methods is likely to be used to measure the impact of these materials and to guide future revisions and updates to ensure their continued relevance and usefulness.

Conclusion

In conclusion, the publicly available resources described in this article can support healthcare providers, policymakers, researchers, and other implementers in improving the care and quality of life of children and adolescents with cancer by applying evidence-based strategies to specific contexts. Similarly, these resources can facilitate the design of additional strategies to successfully develop, implement, and sustain interventions to improve childhood cancer care, reducing resource costs and improving health outcomes, especially related to morbidity and mortality from childhood cancer. Greater investments in childhood cancer projects and interventions (toward the reduction of abandonment of treatment, improving the opportunity and quality of diagnostics and treatment, integration of palliative care, nutrition, and nursing, among others), research, and innovation will promote equity and accelerate progress toward optimal outcomes for children and adolescents affected by cancer worldwide. Further research is needed to determine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

Disclaimer.

Authors hold sole responsibility for the views expressed in the manuscript, which may not necessarily reflect the opinion or policy of the RPSP/PAJPH and/or the Pan American Health Organization (PAHO).

REFERENCES

Publication Dates

History