Children with special needs in health: challenges of the single health system in the 21st century.

OBJECTIVE: Reflect on the gaps in the care of Children with Special Needs in Health that demand complex clinical care with dependence on technological support for the maintenance of life, in the Unified Health System. METHODS: This is a reflection study based on recent policies and literature related to the theme. DISCUSSION: Despite the advances achieved with the Unified Health System with regard to access to health services and the expansion of Primary Care, with the aim of reorienting health, it can be said that the health care model for CSHCN in Brazil is still centered on the hospital and medical knowledge. FINAL CONSIDERATIONS: There are gaps in the policies for children aimed at the new paediatric profile, and little is discussed about its implications for the Unified Health System.

Mortality from gastroschisis in the state of Rio de Janeiro: a 10-year series.

OBJECTIVE: To analyze mortality and associated factors in a series of gastroschisis at birth in the state of Rio de Janeiro in a 10-year period (2005 to 2014). METHOD: A retrospective cohort study, which related the databases of the Live Births Information System and the Mortality Information System by probabilistic linkage. Final database was constructed in two stages: preparation of the two initial databases and establishment of relationships between them. RESULTS: Preterm newborns and those with low birthweight had higher risk of death, with statistical significance (p = 0.03 and p = 0.006, respectively). Regarding place of birth, although death frequency was higher in maternity units than in general hospitals (p = 0.04; OR = 0.5; 95%CI 0.3-1.0), it was observed that a unit characterized as a general hospital had a high birth frequency (61.2%). Furthermore, the comparative analysis of the risk of death between this unit and others showed a 7.5 higher risk of death in general hospitals and 3.2 higher in maternity units, with statistical significance (p < 0.001). Moreover, births in level II intensive care units had 3.9 times more risk of death compared with level III (p < 0.001). CONCLUSION: This study foments the discussion of two possible strategies in the treatment of gastroschisis in newborns. First, the centralization of care in tertiary units, enabling malformation care to be analyzed in a more detailed and standardized manner. Second, and perhaps more feasible, the elaboration of clinical guidelines to standardize immediate care for gastroschisis in babies born outside tertiary centers, as well as the standardization of their transportation until arrival at the tertiary center.

Children with special needs in health: challenges of the single health system in the 21st century / Niños con necesidades especiales en salud: desafíos del sistema único de salud en el siglo XXI / Criança com necessidades especiais de saúde: desafios do sistema único de saúde no século XXI

ABSTRACT Objective: Reflect on the gaps in the care of Children with Special Needs in Health that demand complex clinical care with dependence on technological support for the maintenance of life, in the Unified Health System. Methods: This is a reflection study based on recent policies and literature related to the theme. Discussion: Despite the advances achieved with the Unified Health System with regard to access to health services and the expansion of Primary Care, with the aim of reorienting health, it can be said that the health care model for CSHCN in Brazil is still centered on the hospital and medical knowledge. Final considerations: There are gaps in the policies for children aimed at the new paediatric profile, and little is discussed about its implications for the Unified Health System.

RESUMEN Objetivo: Reflejar las lagunas en la atención a los Niños con Necesidades Especiales de Salud, cuidados clínicos complejos de esa demanda con dependencia de la ayuda tecnológica para el mantenimiento de la vida, en el Sistema Único de Salud. Métodos: Se trata de un estudio basado en la reflexión de la política y de la literatura recientes relacionadas al tema. Discusión: Aunque los avances conquistados con el Sistema Único de Salud acerca del acceso a los servicios médicos y a la ampliación de la atención básica, con el objetivo para reorientar la salud, pueden ser afirmados que el modelo de la atención a la salud a CRIANES en Brasil todavía se centra en el hospital y el "saber médico". Consideraciones finales: Se observan lagunas en las políticas para el niño destinadas al nuevo perfil de la pediatría, y poco se discute sobre sus implicaciones para el Sistema Único de Salud.

RESUMO Objetivo: Refletir sobre as lacunas no atendimento às Crianças com Necessidades Especiais de Saúde que demandam cuidados clínicos complexos com dependência de suporte tecnológico para manutenção da vida, no Sistema Único de Saúde. Métodos: Trata-se de um estudo de reflexão pautado nas políticas e literatura recentes relacionadas ao tema. Discussão: Apesar dos avanços conquistados com o Sistema Único de Saúde no que diz respeito ao acesso aos serviços de saúde e à ampliação da Atenção Básica, com o objetivo de reorientar a saúde, pode-se afirmar que o modelo de atenção à saúde às CRIANES no Brasil ainda é centrado no hospital e no saber médico. Considerações finais: Observam-se lacunas nas políticas para a criança destinadas ao novo perfil de pediatria, e pouco se discute sobre suas implicações para o Sistema Único de Saúde.

Mortality from gastroschisis in the state of Rio de Janeiro: a 10-year series / Mortalidade por gastrosquise no estado do Rio de Janeiro: uma série de 10 anos

ABSTRACT OBJECTIVE To analyze mortality and associated factors in a series of gastroschisis at birth in the state of Rio de Janeiro in a 10-year period (2005 to 2014). METHOD A retrospective cohort study, which related the databases of the Live Births Information System and the Mortality Information System by probabilistic linkage. Final database was constructed in two stages: preparation of the two initial databases and establishment of relationships between them. RESULTS Preterm newborns and those with low birthweight had higher risk of death, with statistical significance (p = 0.03 and p = 0.006, respectively). Regarding place of birth, although death frequency was higher in maternity units than in general hospitals (p = 0.04; OR = 0.5; 95%CI 0.3-1.0), it was observed that a unit characterized as a general hospital had a high birth frequency (61.2%). Furthermore, the comparative analysis of the risk of death between this unit and others showed a 7.5 higher risk of death in general hospitals and 3.2 higher in maternity units, with statistical significance (p < 0.001). Moreover, births in level II intensive care units had 3.9 times more risk of death compared with level III (p < 0.001). CONCLUSION This study foments the discussion of two possible strategies in the treatment of gastroschisis in newborns. First, the centralization of care in tertiary units, enabling malformation care to be analyzed in a more detailed and standardized manner. Second, and perhaps more feasible, the elaboration of clinical guidelines to standardize immediate care for gastroschisis in babies born outside tertiary centers, as well as the standardization of their transportation until arrival at the tertiary center.

RESUMO OBJETIVO Analisar a mortalidade e fatores associados em uma série de nascimentos com gastrosquise no estado do Rio de Janeiro em 10 anos (2005 a 2014). MÉTODO Estudo de coorte retrospectiva, no qual foram relacionadas as bases de dados do Sistema de Informação sobre Nascidos Vivos e do Sistema de Informação sobre Mortalidade por linkage probabilístico. A base de dados final foi construída em duas etapas, que consistiram em: preparo das duas bases de dados iniciais e estabelecimento de relações entre elas. RESULTADOS Os recém-nascidos pré-termo e os com baixo peso ao nascer tiveram maior chance de óbito, com significância estatística (p = 0,03 e p = 0,006, respectivamente). Em relação ao local de nascimento, embora a frequência de óbito tenha sido maior nas maternidades do que em hospitais gerais (p = 0,04; OR = 0,5; IC95% 0,3-1,0), foi observado que uma unidade caracterizada como hospital geral apresentou uma frequência alta de nascimentos (61,2%) e, na análise comparativa da chance de óbito dessa unidade com as demais, encontrou-se uma chance de morrer 7,5 maior em hospitais gerais e 3,2 maior em maternidades, com significância estatística (p < 0,001). Além disso, nascer em unidades de terapia intensiva tipo II aumentou a chance de óbito em 3,9 vezes em comparação com as do tipo III (p < 0,001). CONCLUSÃO Este estudo dá subsídios para a discussão de duas possíveis estratégias no tratamento de recém-nascidos com gastrosquise. A primeira seria a centralização do cuidado em unidades terciárias, possibilitando que o cuidado à malformação seja analisado de forma mais minuciosa e padronizada. A segunda, e talvez mais factível, seria a elaboração de diretrizes clínicas que padronizem o cuidado imediato aos bebês com gastrosquise nascidos fora de centros terciários, bem como a padronização do transporte deles até a chegada ao centro terciário.