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ABSTRACT Objective. To highlight the objectives, achievements, challenges, and next steps for the World Health Organization's Global Initiative for Childhood Cancer (GICC) framework, a project designed to improve psychosocial care (PSC) in pediatric cancer centers across Latin America and the Caribbean (LAC). Methods. The project was launched in Peru, the first GICC focal country, in November 2020. The diagnosis phase included a survey and a semistructured interview with health professionals to assess PSC practices in institutions, and a needs assessment survey for caregivers. In the second phase, a strategic plan was developed to address the identified needs, including the adaptation of PSC standards, the establishment of multicenter working groups, the expansion of the proposal, and the development of materials. Results. The study found that PSC was not being adequately provided in accordance with international standards. Six adapted standards were proposed and validated, and more than 50 regional health professionals participated in online activities to support the project. The implementation process is currently ongoing, with the establishment of five multidisciplinary working groups, one regional committee, and the production of 16 technical outputs. Conclusion. This project represents a substantial step forward to improve PSC for pediatric patients with cancer and their families in LAC countries. The establishment of working groups and evidence-based interventions strengthen the proposal and its implementation. Development of health policies that include PSC according to standards is needed to achieve sustainable results in the quality of life of children with cancer and their families.
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RESUMO Objetivo. Destacar os objetivos, as conquistas, os desafios e as próximas etapas da Iniciativa Global para o Câncer Infantil (GICC), um projeto criado pela Organização Mundial da Saúde para melhorar a atenção psicossocial em centros de câncer pediátrico na América Latina e no Caribe. Métodos. O projeto foi lançado no Peru, o primeiro país focal da GICC, em novembro de 2020. A fase de diagnóstico incluiu uma pesquisa e uma entrevista semiestruturada com profissionais de saúde para avaliar as práticas de atenção psicossocial nas instituições, bem como uma pesquisa para avaliar as necessidades dos cuidadores. Na segunda fase, foi desenvolvido um plano estratégico para atender às necessidades identificadas, incluindo uma adaptação de padrões de atenção psicossocial, o estabelecimento de grupos de trabalho multicêntricos, a expansão da proposta e o desenvolvimento de materiais. Resultados. O estudo constatou que, de acordo com padrões internacionais, a atenção psicossocial não estava sendo adequadamente oferecida. Seis padrões adaptados foram propostos e validados, e mais de 50 profissionais de saúde da região participaram de atividades on-line para apoiar o projeto. O processo de implementação está em andamento, com a formação de cinco grupos de trabalho multidisciplinares e um comitê regional e a produção de 16 relatórios técnicos. Conclusão. Este projeto representa um avanço substancial para melhorar a atenção psicossocial para pacientes pediátricos com câncer e suas famílias nos países da América Latina e do Caribe. A criação de grupos de trabalho e intervenções baseadas em evidências fortalecem a proposta e sua implementação. É preciso desenvolver políticas de saúde que incluam atenção psicossocial segundo padrões estabelecidos para alcançar resultados sustentáveis na qualidade de vida das crianças com câncer e de suas famílias.
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La fibrosis quística ha entrado en la era de la terapia específica con los moduladores, útiles en variantes genéticas definidas por estudio molecular, con resultados clínicos exitosos. Este es un resumen de la publicación reciente de la Sociedad Respiratoria Europea que establece los estándares de cuidado para los pacientes que reciben este tratamiento.
Cystic fibrosis has entered the era of specific therapy called modulators, useful in genetic variants defined by molecular study, with successful clinical results. This is a summary of the recent publication of the European Respiratory Society that establishes the standards of care for patients receiving this treatment.
Subject(s)
Humans , Child , Cystic Fibrosis Transmembrane Conductance Regulator/genetics , Cystic Fibrosis/genetics , Cystic Fibrosis/drug therapy , Genetic Variation , Standard of Care , Chloride Channel Agonists/therapeutic useABSTRACT
Introducción: la atrofia muscular espinal (AME) es la primera causa de origen genético de muerte en la infancia. En los últimos 20 años han sido excepcionales los avances en el conocimiento de su base genética, de su historia natural y se han desarrollado estándares de cuidado y nuevas terapias. Este veloz aumento del conocimiento ha llevado al desarrollo de terapias eficaces para esta devastadora enfermedad, pero el tiempo son neuronas, y esa frase nos lleva a pensar la importancia del diagnóstico precoz y, por qué no, del diagnóstico presintomático mediante pesquisa neonatal. Métodos: revisión de la bibliografía disponible, a través de búsqueda en PubMed y Google para trabajos no indexados o publicaciones de organismos de Salud. Resultados: varios estudios clínicos han mostrado la mayor eficacia del tratamiento en pacientes presintomáticos, por lo que lograrlo en estos pacientes llevaría a cambiar radicalmente la historia de esta enfermedad. Conclusión: es importante analizar y promover el desarrollo de pilotos para pesquisa neonatal en vistas a lograr experiencia para, a partir de ello, pensar en la posibilidad de incorporarlo a programas nacionales. (AU)
Introduction: spinal muscular atrophy (SMA) is the first cause of genetic origin of death in childhood. Throughout the last 20 years, we have witnessed exceptional advances in the knowledge of its genetic base, the history of its nature and several standards of care and new therapies have been developed. This rapid increase in knowledge has led to the development of effective therapies for this devastating disease. However, time is neurons, and that phrase reminds us of the importance of early diagnosis, and, why not, of pre-symptomatic diagnosis by means of neonatal screening. Methods: review of scientific papers searching in Pubmed or Google for non-indexed articles or publications of Health organisms. Results: several clinical studies have shown the greatest effectiveness of treatment in pre-symptomatic patients, so achieving the same in these patients would result in radically changing the history of this disease. Discussion: it is important to analyze and promote the development of pilots for neonatal screening in order to gain experience, so from there on to be able to think about the possibility of incorporating it into national programs. (AU)
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Humans , Male , Female , Infant, Newborn , Infant , Child, Preschool , Muscular Atrophy, Spinal/diagnosis , Neonatal Screening , Muscular Atrophy, Spinal/genetics , Muscular Atrophy, Spinal/therapy , Incidence , Natural History of Diseases , Early DiagnosisABSTRACT
Introducción. Los programas para la prevención y manejo de las complicaciones derivadas de la enfermedad y del tratamiento antineoplásico han contribuido para mejorar la calidad de vida y supervivencia de pacientes pediátricos con cáncer. A pesar de lo anterior, no es claro cómo mantener o mejorar la calidad de la atención. El objetivo de este estudio fue determinar los criterios utilizados a nivel internacional que establecen los estándares para el manejo óptimo de los pacientes pediátricos con leucemia linfoblástica aguda o con linfoma de Hodgkin, mediante una revisión de la literatura. Métodos. Se realizó una búsqueda en Medline y Google. No se encontraron publicaciones específicas del manejo de pacientes con leucemia linfoblástica aguda o linfoma de Hodgkin, sino para todos los tipos de cáncer en niños. La información compilada de cada publicación se describió de manera cualitativa de los tres aspectos generales que determinan la calidad de la atención médica: la infraestructura, el proceso y el resultado. Resultados. Se seleccionaron 21 publicaciones, 19 de las cuales describen los elementos que deben estar presentes en todas las unidades médicas que atienden pacientes pediátricos con cáncer. En cuanto a la infraestructura, es necesario disponer de personal capacitado para la atención de niños con cáncer, así como instalaciones e insumos apropiados. Del proceso de atención destacaron la identificación y el tratamiento apropiado de complicaciones en todo momento, la disponibilidad de los protocolos de tratamiento que han probado su eficacia, así como las actividades de capacitación para el personal y la evaluación de los resultados obtenidos del proceso de atención. Dos publicaciones reportaron que, al implementar la mayoría de los elementos descritos, disminuye la mortalidad de los niños con cáncer en países en vías de desarrollo. Conclusiones. A pesar de que son muchos elementos que se deben considerar para brindar los óptimos cuidados a niños con cáncer, su implementación contribuye a mejorar la calidad de atención y su supervivencia.
Background. Programs for the prevention and management of disease complications and antineoplastic treatment have contributed to improve quality of life and survival of pediatric cancer patients. Despite the above, it remains unclear how to maintain or improve the quality of care. We undertook this study to determine international criteria that establish standards for the optimal management of pediatric patients with acute lymphoblastic leukemia (ALL) or Hodgkin's lymphoma (HL) by conducting a review of the literature. Methods. We searched Medline and Google. From the search, we did not identify specific publications for ALL or HL, but the criteria applied for all pediatric cancer patients. Information compiled for each publication is described qualitatively according to three general aspects that determine the quality of medical care: infrastructure, process and outcome. Results. We selected 21 publications. Nineteen publications describe elements that must be present in all medical units for pediatric patients with cancer. Regarding infrastructure, it is necessary to have multidisciplinary health care professionals specialized in pediatric oncology patients and to have appropriate facilities and supplies. Whereas the process of care includes identifying and providing appropriate treatment for complications at any time, availability of treatment protocols proven to be effective and continuous training for staff, as well as a program for evaluation of the quality of care. Two publications reported that after implementing most of the elements described, there is decrease in mortality of children with cancer in developing countries. Conclusions. Although the number of elements for the provision of optimal care for children with cancer is high, their implementation contributes to the improvement of quality of care and survival.
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OBJECTIVES: Sharing of cancer-related information among healthcare professionals is crucial to ensuring the quality of long-term care for cancer survivors. Appropriate distribution of the essential facts can be achieved using data models. The purpose of this study was to develop and validate suitable data models for use in the nursing assessment of cancer survivors. METHODS: The models developed in this study were based on a modification of concept analysis developed by Walker and Avant. Our approach involved determining the purpose of the analysis, identifying data elements, defining these elements and their uses, determining critical attributes, value sets, and cardinalities, and ultimately constructing data models which were examined externally by domain experts. RESULTS: We developed 112 data models with 112 data elements, 29 critical attributes, 102 value sets, and 6 data types for the assessment of cancer survivors. External validation revealed that the data elements, critical attributes, and value sets proposed were comprehensive, relevant, and sufficiently useful to encompass nursing issues related to cancer survivors. CONCLUSIONS: Data models developed in this study will contribute to ensuring the semantic consistency of data collected from cancer survivors, which will improve the quality of nursing assessments and in turn translate to improved long-term patient care.