Addressing childhood cancer: actions taken in the Dominican Republic / Abordaje del cáncer infantil: medidas adoptadas en República Dominicana / Enfrentamento do câncer infantil: medidas tomadas na República Dominicana

[ABSTRACT]. This report provides a summary of childhood cancer and the efforts made in the Dominican Republic to address child and adolescent cancer in line with the World Health Organization’s Global Initiative for Childhood Cancer. Information was obtained by review of recent local and international literature on pediatric oncology. As a result of the Global Initiative, a meeting was held by the Council of Ministers of Health of Central America to support the development of national pediatric cancer plans for each country. The objectives of these plans are to improve overall survival and quality of care for children with cancer through early detection, diagnosis, and treatment. In the Dominican Republic, several steps have been taken in the past 5 years to enhance diagnosis and care of children with cancer. For example, the National Committee of Childhood Cancer, headed by the Ministry of Public Health and including relevant stakeholders, was established to develop the national childhood cancer plan. In addition, a campaign was launched to raise awareness of childhood cancer, and the first early detection manual and public policy on child and adolescent cancer were published. A government initiative has been working to improve the hospital infrastructure and expand the pediatric cancer center, and a national course on early detection of pediatric cancers has been held. In 2023, the National Strategic Childhood Cancer Plan 2023–2030 was launched in the Dominican Republic. The plan will help policy-makers, implementers, researchers, and advocates enhance diagnosis and care of children with cancer.

[RESUMEN]. En este informe se presenta un resumen del cáncer infantil y las medidas adoptadas por República Dominicana para abordar el cáncer en la población infantil y adolescente en consonancia con la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. La información se obtuvo mediante el análisis de las publicaciones nacionales e internacionales recientes sobre oncología pediátrica. Como resultado de la Iniciativa Mundial, el Consejo de Ministros de Salud de Centroamérica celebró una reunión para brindar apoyo a la elaboración de planes nacionales sobre el cáncer infantil para cada país. Los objetivos de estos planes son mejorar la supervivencia general y la calidad de la atención que se presta a la población infantil con cáncer mediante la detección temprana, el diagnóstico y el tratamiento. En los últimos cinco años, República Dominicana ha adoptado varias medidas para mejorar el diagnóstico y la atención prestada a la población infantil con cáncer. Así, por ejemplo, se creó el Comité Nacional de Cáncer Infantil, encabezado por el Ministerio de Salud e integrado por las partes interesadas pertinentes, para elaborar el plan nacional sobre el cáncer infantil. Además, se puso en marcha una campaña de sensibilización sobre el cáncer infantil y se publicaron el primer manual de detección precoz y la primera política pública sobre el cáncer en la población infantil y adolescente. Mediante una iniciativa gubernamental se ha buscado mejorar la infraestructura hospitalaria y ampliar el centro de atención a pacientes oncológicos pediátricos, al tiempo que se ha impartido un curso nacional sobre detección precoz del cáncer infantil. En el 2023, República Dominicana puso en marcha el Plan Estratégico Nacional sobre Cáncer Infantil 2023-2030. Este plan será útil a los responsables de la formulación de políticas, las personas encargadas de su ejecución, los investigadores y los promotores para mejorar el diagnóstico y la atención prestada a la población infantil con cáncer.

[RESUMO]. Este relatório fornece um resumo sobre o câncer infantil e os esforços da República Dominicana para enfrentar a doença em crianças e adolescentes, em consonância com a Iniciativa Global para o Câncer Infantil da Organização Mundial da Saúde. As informações foram obtidas por meio de uma revisão da literatura local e internacional recente sobre oncologia pediátrica. Em consequência da Iniciativa Global, o Conselho de Ministros da Saúde da América Central se reuniu para apoiar a elaboração de planos nacionais de câncer pediátrico para cada país. Os objetivos desses planos são melhorar a sobrevida global e a qualidade da atenção a crianças com câncer por meio de detecção, diagnóstico e tratamento precoces. Na República Dominicana, várias medidas foram tomadas nos últimos cinco anos para melhorar o diagnóstico e a atenção a crianças com câncer. Por exemplo, o Comitê Nacional de Câncer Infantil, que é chefiado pelo Ministério da Saúde e inclui as partes interessadas pertinentes, foi criado para elaborar o plano nacional de câncer infantil. Foi lançada uma campanha de conscientização sobre o câncer infantil no país. Além disso, foram publica- dos o primeiro manual de detecção precoce e a política pública de câncer infantojuvenil. Uma iniciativa do governo vem trabalhando para melhorar a infraestrutura hospitalar e ampliar o centro de câncer pediátrico e ministrou um curso nacional sobre a detecção precoce de cânceres pediátricos. Em 2023, foi lançado o Plano Estratégico Nacional de Câncer Infantil 2023–2030 na República Dominicana. O plano ajudará formuladores de políticas, implementadores, pesquisadores e defensores da causa a aprimorar o diagnóstico e a atenção a crianças com câncer.

Connecting Clinical Capacity and Intervention Sustainability in Resource-Variable Pediatric Oncology Centers in Latin America.

Clinical capacity for sustainability, or the clinical resources needed to sustain an evidence-based practice, represent proximal determinants that contribute to intervention sustainment. We examine the relationship between clinical capacity for sustainability and sustainment of PEWS, an evidence-based intervention to improve outcomes for pediatric oncology patients in resource-variable hospitals. We conducted a cross-sectional survey among Latin American pediatric oncology centers participating in Proyecto Escala de Valoración de Alerta Temprana (EVAT), an improvement collaborative to implement Pediatric Early Warning Systems (PEWS). Hospitals were eligible if they had completed PEWS implementation. Clinicians were eligible to participate if they were involved in PEWS implementation or used PEWS in clinical work. The Spanish language survey consisted of 56 close and open-ended questions about the respondent, hospital, participants' assessment of clinical capacity to sustain PEWS using the clinical sustainability assessment tool (CSAT), and perceptions about PEWS and its use as an intervention. Results were analyzed using a multi-level modeling approach to examine the relationship between individual, hospital, intervention, and clinical capacity determinants to PEWS sustainment. A total of 797 responses from 37 centers in 13 countries were included in the analysis. Eighty-seven percent of participants reported PEWS sustainment. After controlling for individual, hospital, and intervention factors, clinical capacity was significantly associated with PEWS sustainment (OR 3.27, p < .01). Marginal effects from the final model indicate that an increasing capacity score has a positive influence (11% for every additional CSAT point) of predicting PEWS sustainment. PEWS is a sustainable intervention and clinical capacity to sustain PEWS contributes meaningfully to PEWS sustainment.

Addressing childhood cancer: actions taken in the Dominican Republic.

This report provides a summary of childhood cancer and the efforts made in the Dominican Republic to address child and adolescent cancer in line with the World Health Organization's Global Initiative for Childhood Cancer. Information was obtained by review of recent local and international literature on pediatric oncology. As a result of the Global Initiative, a meeting was held by the Council of Ministers of Health of Central America to support the development of national pediatric cancer plans for each country. The objectives of these plans are to improve overall survival and quality of care for children with cancer through early detection, diagnosis, and treatment. In the Dominican Republic, several steps have been taken in the past 5 years to enhance diagnosis and care of children with cancer. For example, the National Committee of Childhood Cancer, headed by the Ministry of Public Health and including relevant stakeholders, was established to develop the national childhood cancer plan. In addition, a campaign was launched to raise awareness of childhood cancer, and the first early detection manual and public policy on child and adolescent cancer were published. A government initiative has been working to improve the hospital infrastructure and expand the pediatric cancer center, and a national course on early detection of pediatric cancers has been held. In 2023, the National Strategic Childhood Cancer Plan 2023-2030 was launched in the Dominican Republic. The plan will help policy-makers, implementers, researchers, and advocates enhance diagnosis and care of children with cancer.

En este informe se presenta un resumen del cáncer infantil y las medidas adoptadas por República Dominicana para abordar el cáncer en la población infantil y adolescente en consonancia con la Iniciativa Mundial contra el Cáncer Infantil de la Organización Mundial de la Salud. La información se obtuvo mediante el análisis de las publicaciones nacionales e internacionales recientes sobre oncología pediátrica. Como resultado de la Iniciativa Mundial, el Consejo de Ministros de Salud de Centroamérica celebró una reunión para brindar apoyo a la elaboración de planes nacionales sobre el cáncer infantil para cada país. Los objetivos de estos planes son mejorar la supervivencia general y la calidad de la atención que se presta a la población infantil con cáncer mediante la detección temprana, el diagnóstico y el tratamiento. En los últimos cinco años, República Dominicana ha adoptado varias medidas para mejorar el diagnóstico y la atención prestada a la población infantil con cáncer. Así, por ejemplo, se creó el Comité Nacional de Cáncer Infantil, encabezado por el Ministerio de Salud e integrado por las partes interesadas pertinentes, para elaborar el plan nacional sobre el cáncer infantil. Además, se puso en marcha una campaña de sensibilización sobre el cáncer infantil y se publicaron el primer manual de detección precoz y la primera política pública sobre el cáncer en la población infantil y adolescente. Mediante una iniciativa gubernamental se ha buscado mejorar la infraestructura hospitalaria y ampliar el centro de atención a pacientes oncológicos pediátricos, al tiempo que se ha impartido un curso nacional sobre detección precoz del cáncer infantil. En el 2023, República Dominicana puso en marcha el Plan Estratégico Nacional sobre Cáncer Infantil 2023-2030. Este plan será útil a los responsables de la formulación de políticas, las personas encargadas de su ejecución, los investigadores y los promotores para mejorar el diagnóstico y la atención prestada a la población infantil con cáncer.

Este relatório fornece um resumo sobre o câncer infantil e os esforços da República Dominicana para enfrentar a doença em crianças e adolescentes, em consonância com a Iniciativa Global para o Câncer Infantil da Organização Mundial da Saúde. As informações foram obtidas por meio de uma revisão da literatura local e internacional recente sobre oncologia pediátrica. Em consequência da Iniciativa Global, o Conselho de Ministros da Saúde da América Central se reuniu para apoiar a elaboração de planos nacionais de câncer pediátrico para cada país. Os objetivos desses planos são melhorar a sobrevida global e a qualidade da atenção a crianças com câncer por meio de detecção, diagnóstico e tratamento precoces. Na República Dominicana, várias medidas foram tomadas nos últimos cinco anos para melhorar o diagnóstico e a atenção a crianças com câncer. Por exemplo, o Comitê Nacional de Câncer Infantil, que é chefiado pelo Ministério da Saúde e inclui as partes interessadas pertinentes, foi criado para elaborar o plano nacional de câncer infantil. Foi lançada uma campanha de conscientização sobre o câncer infantil no país. Além disso, foram publicados o primeiro manual de detecção precoce e a política pública de câncer infantojuvenil. Uma iniciativa do governo vem trabalhando para melhorar a infraestrutura hospitalar e ampliar o centro de câncer pediátrico e ministrou um curso nacional sobre a detecção precoce de cânceres pediátricos. Em 2023, foi lançado o Plano Estratégico Nacional de Câncer Infantil 2023­2030 na República Dominicana. O plano ajudará formuladores de políticas, implementadores, pesquisadores e defensores da causa a aprimorar o diagnóstico e a atenção a crianças com câncer.

The Effect of COVID-19 on Oncology Care for Adolescents and Young Adults in Latin America.

Children with cancer in low- and middle-income countries were disproportionately impacted by the COVID-19 pandemic, but little is known about how adolescents and young adults (AYAs) with cancer were affected. Sixty-seven physicians and nonphysician providers were interviewed about their experiences caring for AYAs with cancer in Latin America. Quotes related to the COVID-19 pandemic were identified and grouped into themes. Barriers from the COVID-19 pandemic included limited space, restrictions on travel, reduced funding, limited staff, limited services, and changes to treatment. However, improvements to care that arose from the COVID-19 pandemic included better access to distance learning and telemedicine.

Effect of paediatric early warning systems (PEWS) implementation on clinical deterioration event mortality among children with cancer in resource-limited hospitals in Latin America: a prospective, multicentre cohort study.

BACKGROUND: Paediatric early warning systems (PEWS) aid in the early identification of clinical deterioration events in children admitted to hospital. We aimed to investigate the effect of PEWS implementation on mortality due to clinical deterioration in children with cancer in 32 resource-limited hospitals across Latin America. METHODS: Proyecto Escala de Valoración de Alerta Temprana (Proyecto EVAT) is a quality improvement collaborative to implement PEWS in hospitals providing childhood cancer care. In this prospective, multicentre cohort study, centres joining Proyecto EVAT and completing PEWS implementation between April 1, 2017, and May 31, 2021, prospectively tracked clinical deterioration events and monthly inpatient-days in children admitted to hospital with cancer. De-identified registry data reported between April 17, 2017, and Nov 30, 2021, from all hospitals were included in analyses; children with limitations on escalation of care were excluded. The primary outcome was clinical deterioration event mortality. Incidence rate ratios (IRRs) were used to compare clinical deterioration event mortality before and after PEWS implementation; multivariable analyses assessed the correlation between clinical deterioration event mortality and centre characteristics. FINDINGS: Between April 1, 2017, and May 31, 2021, 32 paediatric oncology centres from 11 countries in Latin America successfully implemented PEWS through Proyecto EVAT; these centres documented 2020 clinical deterioration events in 1651 patients over 556 400 inpatient-days. Overall clinical deterioration event mortality was 32·9% (664 of 2020 events). The median age of patients with clinical deterioration events was 8·5 years (IQR 3·9-13·2), and 1095 (54·2%) of 2020 clinical deterioration events were reported in male patients; data on race or ethnicity were not collected. Data were reported per centre for a median of 12 months (IQR 10-13) before PEWS implementation and 18 months (16-18) after PEWS implementation. The mortality rate due to a clinical deterioration event was 1·33 events per 1000 patient-days before PEWS implementation and 1·09 events per 1000 patient-days after PEWS implementation (IRR 0·82 [95% CI 0·69-0·97]; p=0·021). In the multivariable analysis of centre characteristics, higher clinical deterioration event mortality rates before PEWS implementation (IRR 1·32 [95% CI 1·22-1·43]; p<0·0001), being a teaching hospital (1·18 [1·09-1·27]; p<0·0001), not having a separate paediatric haematology-oncology unit (1·38 [1·21-1·57]; p<0·0001), and having fewer PEWS omissions (0·95 [0·92-0·99]; p=0·0091) were associated with a greater reduction in clinical deterioration event mortality after PEWS implementation; no association was found with country income level (IRR 0·86 [95% CI 0·68-1·09]; p=0·22) or clinical deterioration event rates before PEWS implementation (1·04 [0·97-1·12]; p=0·29). INTERPRETATION: PEWS implementation was associated with reduced clinical deterioration event mortality in paediatric patients with cancer across 32 resource-limited hospitals in Latin America. These data support the use of PEWS as an effective evidence-based intervention to reduce disparities in global survival for children with cancer. FUNDING: American Lebanese Syrian Associated Charities, US National Institutes of Health, and Conquer Cancer Foundation. TRANSLATIONS: For the Spanish and Portuguese translations of the abstract see Supplementary Materials section.

Impact of hospital characteristics on implementation of a Pediatric Early Warning System in resource-limited cancer hospitals.

Background: Pediatric Early Warning Systems (PEWS) aid in identification of deterioration in hospitalized children with cancer but are underutilized in resource-limited settings. Proyecto EVAT is a multicenter quality improvement (QI) collaborative in Latin America to implement PEWS. This study investigates the relationship between hospital characteristics and time required for PEWS implementation. Methods: This convergent mixed-methods study included 23 Proyecto EVAT childhood cancer centers; 5 hospitals representing quick and slow implementers were selected for qualitative analysis. Semi-structured interviews were conducted with 71 stakeholders involved in PEWS implementation. Interviews were recorded, transcribed and translated to English, then coded using a priori and novel codes. Thematic content analysis explored the impact of hospital characteristics and QI experience on time required for PEWS implementation and was supplemented by quantitative analysis exploring the relationship between hospital characteristics and implementation time. Results: In both quantitative and qualitative analysis, material and human resources to support PEWS significantly impacted time to implementation. Lack of resources produced various obstacles that extended time necessary for centers to achieve successful implementation. Hospital characteristics, such as funding structure and type, influenced PEWS implementation time by determining their resource-availability. Prior hospital or implementation leader experience with QI, however, helped facilitate implementation by assisting implementers predict and overcome resource-related challenges. Conclusions: Hospital characteristics impact time required to implement PEWS in resource-limited childhood cancer centers; however, prior QI experience helps anticipate and adapt to resource challenges and more quickly implement PEWS. QI training should be a component of strategies to scale-up use of evidence-based interventions like PEWS in resource-limited settings.

Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America.

Importance: Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. Objectives: To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. Design, Setting, and Participants: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. Main Outcomes and Measures: The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. Results: A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. Conclusions and Relevance: This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.

Cáncer infantil: lo que debemos saber / Childhood cáncer: What we should know

Introducción: el cáncer representa una de las principales causas de muerte en niños, niñas y adolescentes a nivel global, el cual es superado escasamente por los accidentes. Las neoplasias más frecuentes son, en primer lugar, las leucemias; segundo, los tumores del Sistema Nervioso Central; y, tercero, los linfomas. Es importante destacar que no existe prevención, sin embargo, hay signos de alarma que si se logran identificar a tiempo pueden verse traducidos en una enfermedad más manejable con una sobrevida más alta y un mejor pronóstico. Objetivo: realizar una actualización académica sobre la importancia de los signos y síntomas de alarma del cáncer infantil. Método: se realizó una investigación documental y se utilizó como buscador de información científica Google Académico. Se evaluaron artículos de investigación y revisión de diferentes bases de datos, como: site de la Organización Mundial de la Salud, site de la Oficina Panamericana de la Salud, Revista de Pediatría Integral, American Cáncer Society y publicaciones periodísticas locales, entre otros. Conclusiones: el cáncer en la infancia y adolescencia no puede prevenirse; sin embargo, si los médicos de los distintos niveles de atención en salud pueden reconocer los signos de alarma ante un probable caso de malignidad, se lograrán referimientos oportunos, diagnósticos tempranos y una mejor tasa de curabilidad y sobrevida en los niños.

Introduction: Cancer represents one of the main causes of death in children and adolescents globally, which is barely surpassed by accidents. The most frequent neoplasms are leukemias first, Central Nervous System tumors second, and lymphomas third. It is important to note that there is no prevention, however, there are warning signs that, if identified in time, can be translated into a more manageable disease with higher survival and a better prognosis. Objective: To carry out an academic update on the importance of warning signs and symptoms of childhood cancer. Method: A documentary research was carried out and Google Scholar was used as a search engine for scientific information. Research and review articles from different databases were evaluated, such as: the World Health Organization site, the Pan American Health Office site, the Comprehensive Pediatrics Review, the American Cancer Society, local journalistic publications, among others. Conclusions: Cancer in childhood and adolescence cannot be prevented, however, if doctors at the different levels of health care can recognize the warning signs in the event of a probable case of malignancy, timely referrals, early diagnoses and a better curability rate will be achieved and survival in children.

Model for regional collaboration: Successful strategy to implement a pediatric early warning system in 36 pediatric oncology centers in Latin America.

BACKGROUND: Pediatric early warning systems (PEWS) aid in the early identification of deterioration in hospitalized children with cancer; however, they are under-used in resource-limited settings. The authors use the knowledge-to-action framework to describe the implementation strategy for Proyecto Escala de Valoracion de Alerta Temprana (EVAT), a multicenter quality-improvement collaborative, to scale-up PEWS in pediatric oncology centers in Latin America. METHODS: Proyecto EVAT mentored participating centers through an adaptable implementation strategy to: (1) monitor clinical deterioration in children with cancer, (2) contextually adapt PEWS, (3) assess barriers to using PEWS, (4) pilot and implement PEWS, (5) monitor the use of PEWS, (6) evaluate outcomes, and (7) sustain PEWS. The implementation outcomes assessed included the quality of PEWS use, the time required for implementation, and global program impact. RESULTS: From April 2017 to October 2021, 36 diverse Proyecto EVAT hospitals from 13 countries in Latin America collectively managing more than 4100 annual new pediatric cancer diagnoses successfully implemented PEWS. The time to complete all program phases varied among centers, averaging 7 months (range, 3-13 months) from PEWS pilot to implementation completion. All centers ultimately implemented PEWS and maintained high-quality PEWS use for up to 18 months after implementation. Across the 36 centers, more than 11,100 clinicians were trained in PEWS, and more than 41,000 pediatric hospital admissions had PEWS used in their care. CONCLUSIONS: Evidence-based interventions like PEWS can be successfully scaled-up regionally basis using a systematic approach that includes a collaborative network, an adaptable implementation strategy, and regional mentorship. Lessons learned can guide future programs to promote the widespread adoption of effective interventions and reduce global disparities in childhood cancer outcomes. LAY SUMMARY: Pediatric early warning systems (PEWS) are clinical tools used to identify deterioration in hospitalized children with cancer; however, implementation challenges limit their use in resource-limited settings. Proyecto EVAT is a multicenter quality-improvement collaborative to implement PEWS in 36 pediatric oncology centers in Latin America. This is the first multicenter, multinational study reporting a successful implementation strategy (Proyecto EVAT) to regionally scale-up PEWS. The lessons learned from Proyecto EVAT can inform future programs to promote the adoption of clinical interventions to globally improve childhood cancer outcomes.

Using EmPalPed-An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children-As a Strategy to Promote Pediatric Palliative Care.

Background: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational curricula of healthcare programs. Therefore, specific training that improves knowledge of HCPs and access to PC for children and their families is needed. To address this gap, we organized and conducted the Essential Messages in Palliative Care and Pain Management in Children (EmPalPed), an educational toolkit to increase awareness and promote essential knowledge in PPC for low- and middle-income countries. Methodology: The EmPalPed toolkit consisted of a 5-h virtual workshop with small working groups of HCPs caring for children with life-threatening conditions such as cancer. The toolkit was organized along five key domains: (1) PC as it relates to the concept of quality of life (QoL), (2) effective communication, (3) addressing pain management as a top priority, (4) providing end-of-life care, and (5) access to high-quality PC as a fundamental human right. The workshop activities included different educational strategies and tools (e.g., a pocket guide for pain assessment and management, a PPC booklet, a quick guide for communicating bad news, role playing, and discussions of clinical cases). Results: A total of 145 HCPs from 22 centers were trained. The post-test analysis for HCPs showed that attitude and knowledge about communication (p < 0.001), pain assessment (p < 0.001), first-line opioid of choice in children (p < 0.001), and palliative sedation (p < 0.001) had positive and statistically significant changes from the pre-test analysis. Discussion: This study supported the notion that the EmPalPed educational toolkit is an effective mechanism for raising awareness regarding PPC as well as providing training in many of the key aspects of PPC. The EmPalPed training approach should be studied beyond this setting, and the impact should be measured longitudinally.

Physician Perceptions of Palliative Care for Children With Cancer in Latin America.

Importance: The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care. Objective: To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer. Design, Setting, and Participants: This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts. Main Outcomes and Measures: The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data. Results: A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC. Conclusion and Relevance: Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.

Pediatric Oncology Palliative Care Programs in Central America: Pathways to Success.

Palliative care offers children who have life-limiting and life-threatening oncologic illnesses and their families improved quality of life. In some instances, impeccable symptom control can lead to improved survival. Cultural and financial barriers to palliative care in oncology patients occur in all countries, and those located in Central America are no exception. In this article, we summarize how the programs participating in the Asociación de Hemato-Oncólogos Pediatras de Centro America (AHOPCA) have developed dedicated oncology palliative care programs. The experience in Guatemala, El Salvador, Costa Rica, Panama, Dominican Republic and Haiti is detailed, with a focus on history, the barriers that have impeded progress, and achievements. Future directions, which, of course, may be impacted by the COVID-19 pandemic, are described as well.

Assessment of the impact of inpatient infectious events in pediatric patients with newly diagnosed acute leukemia at Dr. Robert Reid Cabral Children's Hospital, Dominican Republic.

Survival rates for pediatric acute leukemia vary dramatically worldwide. Infections are a leading cause of morbidity and mortality, and the impact is amplified in low and middle-income countries. Defining the epidemiology of infection in a specific health care setting is paramount to developing effective interventions. This study aimed to define the epidemiology of and outcomes from infection in children with acute leukemia treated in a large public pediatric hospital in the Dominican Republic. A retrospective cohort was assembled of children newly diagnosed with acute leukemia between July 1, 2015 to June 30, 2017 at Hospital Infantil Dr. Robert Reid Cabral in Santo Domingo. Patients were identified from the Pediatric Oncology Network Database (PONDTM) and hospital admissions from the Oncology admissions logbook. Medical records and microbiology results were reviewed to identify all inpatient invasive infections. Distance from a child's home to the hospital was determined using ArcGIS by Esri. Infection rates were described in discrete time periods after diagnosis and risk factors for invasive infection were explored using negative binomial regression. Overall, invasive infections were common and a prominent source of death in this cohort. Rates were highest in the first 60 days after diagnosis. Gastroenteritis/colitis, cellulitis, and pneumonia were most frequent, with bacteremia common early on. Multidrug resistant bacteria were prevalent among a small number of positive cultures. In a multivariate negative binomial regression model, age ≥ 10 years and distance from the hospital > 100 km were each protective against invasive infection in the first 180 days after diagnosis, findings that were unexpected and warrant further investigation. Over one-third of patient deaths were related to infection. Interventions aimed at reducing infection should target the first 60 days after diagnosis, improved supportive care inside and outside the hospital, and increased antimicrobial stewardship and infection prevention and control measures.

Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task.

BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS: A program's database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS: Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS: The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Metronomic Chemotherapy for Children in Low- and Middle-Income Countries: Survey of Current Practices and Opinions of Pediatric Oncologists.

PURPOSE: Low- and middle-income countries (LMICs) experience the burden of 80% of new childhood cancer cases worldwide, with cure rates as low as 10% in some countries. Metronomics combines frequent administrations of low-dose chemotherapy with drug repurposing, which consists of using already-approved drugs for new medical applications. With wide availability, limited costs, and little infrastructure needs, metronomics can be part of constraint-adapted regimens in these resource-limited settings-with the understanding that metronomics shall not be a substitute for standard treatments when available and doable. Our study aims to describe the experience, practices, opinions, and needs in metronomics of physicians working in LMICs. METHODS: An online questionnaire was sent to more than 1,200 physicians in pediatric oncology networks in LMICs. Items included the type of center, physician's demographics, experience in pediatric oncology, and experience with current knowledge of metronomics. Opinions and perspectives were explored using multiple-answer and open questions. RESULTS: Of physicians, 17% responded. Of respondents, 54.9% declared that they had already used a metronomic regimen. The most frequently cited repositioned drugs were celecoxib (44%) followed by propranolol and valproic acid (17%). Respondents highlighted the advantages of outpatient use (20%) and expected low toxicity (24%). In considering the drawbacks of metronomics, 47% of responses highlighted the lack of scientific evidence or guidelines, 33% the availability or affordability of drugs, and 18% the problem of acceptance or compliance. Of physicians, 79% believed that use of metronomics will spread in LMICs in the near future and 98% of them were willing to participate in international metronomic protocols or registries. CONCLUSION: Metronomics is already used in LMICs and is a potential answer to unmet needs in pediatric oncology. There is room for improvement in the availability of drugs and a necessity to develop collaborative protocols and research to generate level A evidence.

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.

Management of Concurrent Pregnancy and Acute Lymphoblastic Malignancy in Teenaged Patients: Two Illustrative Cases and Review of the Literature.

The usual age range of acute lymphoblastic malignancies (acute lymphoblastic leukemia and advanced-stage lymphoblastic lymphoma) includes teenagers and young adults (<22 years of age) and coincides with the age of fertility. Concurrence of acute lymphoblastic malignancy with pregnancy is therefore most likely to happen during the younger childbearing ages. However, the therapeutic challenges posed by the dual diagnosis of lymphoblastic malignancy and pregnancy have not specifically been studied in the context of age, and management guidelines for pregnant young patients are lacking. Inconsistency in defining the legal decision-making rights of pregnant teenaged patients adds a further level of complexity in this age group. Management of this challenging combination in the young patient therefore entails unique ethical considerations. Here we present two illustrative cases of teenage pregnancy complicated by acute lymphoblastic malignancy, review the available literature, and offer suggestions for the therapeutic management of such cases in adolescent and young adult patients. Importantly, practical management recommendations are provided in the context of clinical ethics principles that are universally applicable, including in developing countries, where the highest incidence of adolescent pregnancies has been documented.