Características clínicas y epidemiológicas asociadas con internación en niños con COVID-19 en un hospital pediátrico de alta complejidad: Estudio de cohorte enero-marzo 2022 / Clinical and epidemiologic characteristics associated with hospital admission in children with COVID19 in a tertiary-care pediatric hospital: A January-March 2022 cohort study

Introducción: La proporción de casos reportados de niños y adolescentes con COVID-19 aumenta progresivamente. La hospitalización relacionada con COVID-19 en niños es infrecuente, pero causa morbilidad y sobrecarga al sistema de salud. Objetivos: Describir las características clínicas y evolutivas de los niños con diagnóstico de COVID-19 en un hospital pediátrico de alta complejidad. Comparar los pacientes que requirieron internación y los que no. Material y métodos: Cohorte prospectiva. Se incluyeron todos los pacientes con diagnóstico virológico de COVID-19 desde 1.1.2022 a 1.3.22 en un hospital pediátrico de alta complejidad. Se compararon los antecedentes, características clínicas y evolutivas de los pacientes según requirieran o no internación. Se utilizó STATA 16. Resultados: n: 1764 pacientes, de ellos 958 eran varones (54%). La mediana de edad fue 56 meses (RIC 17-116). Tenían enfermedad de base 789 pacientes (46%). Las más frecuentes fueron: enfermedad oncohematológica 215 (12%), neurológica 103 pacientes (6%) , enfermedad pulmonar crónica 68 (4%), cardiopatías congénitas 65 (4%) y síndrome genético 57 pacientes (3%). Eran inmunosuprimidos: 292 (17%). Presentaron síntomas relacionados con COVID-19 1319 pacientes (79%). Requirieron internación 591 (34%). Tuvieron coinfección con otros virus respiratorios 33 pacientes (2%). Ingresaron a Cuidados intensivos en relación a la COVID-19 22 pacientes (1.3%) y fallecieron en relación con la infección 8 (0.5%). En el análisis univariado, la presencia de comorbilidades, la coinfección viral y la inmunosupresión se asociaron estadísticamente con el requerimiento de internación. El antecedente de 2 o más dosis de vacuna para SARS-CoV-2 fue un factor protector para la internación en los mayores de 3 años. En el modelo multivariado, los pacientes menores de 3 años (OR 6.5, IC95% 1.2-36.8, p 0.03), con comorbilidades (OR 2.04, IC 95% 1.7- 3.3, p 0.00) y los huéspedes inmunocomprometidos (OR 2.89, IC95% 2.1-4.1, p 0.00) tuvieron más riesgo de internación. Ajustado por el resto de las variables, haber recibido dos o más dosis de vacuna fue un factor protector para la internación (OR 0.65, IC 95% 0.49-0.87, p<0.01). Conclusiones: En este estudio de cohorte prospectivo de niños con diagnóstico confirmado de COVID-19 predominó la enfermedad sintomática. Fueron admitidos en relación con el COVID-19, 34% de los pacientes. La vacunación con dos o más dosis fue un factor protector para la internación en el modelo multivariado. Además, se asociaron estadísticamente con la hospitalización, la edad menor de 3 años, las comorbilidades previas y la inmunosupresión (AU)

Introduction: The rate of reported cases of children and adolescents with COVID-19 is progressively increasing. COVID-19-related hospital admission in children is uncommon, but leads to morbidity and places a burden on the healthcare system. Objectives: To describe the clinical characteristics and outcome of children diagnosed with COVID-19 in a pediatric tertiary-care hospital and to compare patients who required hospital admission with those who did not. Material and methods: A prospective cohort study. All patients with a virological diagnosis of COVID-19 seen between 1.1.2022 and 1.3.22 in a tertiary-care pediatric hospital were included. We compared patient history, clinical characteristics, and outcome according to whether or not they required hospital admission. STATA 16 was used. Results: n: 1764 patients, 958 of whom were male (54%). The median age was 56 months (IQR, 17- 116). Overall, 789 patients had an underlying disease (46%), the most frequent of which were hematology-oncology disease in 215 patients (12%), neurological disease in 103 (6%), chronic lung disease in 68 (4%), congenital heart disease in 65 (4%), and a genetic syndrome in 57 (3%); 292 were immunosuppressed (17%). Overall, 1319 patients (79%) had COVID-19-related symptoms and 591 (34%) required hospital admission. A coinfection with other respiratory viruses was observed in 33 patients (2%). Intensive care admission due to COVID-19 was required in 22 patients (1.3%) and 8 (0.5%) died with COVID-19. In univariate analysis, the presence of comorbidities, viral coinfecton, and immunosuppression were statistically significantly associated with the need for hospitalization. A history of two or more doses of the SARSCoV2 vaccine was a protective factor against hospital admission in children older than 3 years. In the multivariate model, patients younger than 3 years (OR 6.5, 95% CI 1.2-36.8, p 0.03), with comorbidities (OR 2.04, 95%CI 1.7-3.3, p 0.00) and immunocompromised hosts (OR 2.89, 95% CI 2.1-4.1, p 0.00) had a higher risk of hospital admission. When adjusting for the remaining variables, having received two or more doses of the vaccine was found to be a protective factor against hospital admission (OR 0.65, 95% CI 0.49-0.87, p<0.01). Conclusions: In this prospective cohort study of children with a confirmed diagnosis of COVID-19, symptomatic disease predominated. Thirty-four percent of the patients were admitted for COVID-19. Vaccination with two or more doses was a protective factor against hospitalization in the multivariate model. In addition, age younger than 3 years, previous comorbidities, and immunosuppression were statistically associated with hospital admission (AU)

Perfil epidemiológico e clínico de crianças hospitalizadas com cardiopatias congênitas / Perfil epidemiológico y clínico de niños hospitalizados con cardiopatias congénitas / Clinical and epidemiological profile of hospitalized children with congenital heart diseases

Objetivo: Descrever o perfil epidemiológico e clínico de crianças com cardiopatias congênitas admitidas entre 2018 e 2019 em um hospital de referência em Pernambuco. Métodos: Trata-se de um corte transversal envolvendo 310 crianças com cardiopatias congênitas. Foram obtidos dados epidemiológicos e clínicos em prontuários através de formulários padronizados. Houve tabulação em planilha Excel e análise estatística descritiva por meio do Software SPSS 25. Resultados: Verificou-se média de 21,69 meses de idade e predominância do sexo masculino (55,5%). Os principais fatores de risco maternos foram infecção durante a gestação (21,3%) e idade avançada (15,8%). Dentre as doenças crônicas, destacaram-se hipertensão arterial (6,1%) e diabetes mellitus (4,2%). Os predisponentes do paciente foram prematuridade (16,1%), baixo peso ao nascer (17,7%), trissomia do 21 (17,7%) e malformações extracardíacas (7,1%). Sinais e sintomas respiratórios constituíram o principal motivo de hospitalização, sendo registradas dispneia (55,8%), tosse (30,3%) e alterações de ausculta pulmonar (16,1%). Também motivou o internamento a presença de cianose (20,3%). O sopro cardíaco se apresentou na maioria dos pacientes (80,0%). Em percentual relevante dos casos, o diagnóstico ocorreu durante a hospitalização (16,8%). Conclusão: O conhecimento acerca do perfil das cardiopatias congênitas auxilia o diagnóstico, sendo necessária a ampliação do conhecimento científico nesta temática... (AU)

Objetivo: Describir el perfil epidemiológico y clínico de niños con cardiopatías congénitas ingresados entre 2018 y 2019 en un hospital de referencia de Pernambuco. Métodos: estudio transversal con 310 niños con cardiopatías congénitas. Los datos epidemiológicos y clínicos se obtuvieron de las historias clínicas mediante formularios estandarizados. Se realizó tabulación en planilla de Excel y análisis estadístico descriptivo con el Software SPSS 25. Resultados: La edad media fue 21,69 meses y predominio del sexo masculino (55,5%). Los principales factores de riesgo maternos fueron infección durante el embarazo (21,3%) y edad avanzada (15,8%). Las principales enfermedades crónicas fueron hipertensión arterial (6,1%) y diabetes mellitus (4,2%). Los predisponentes del paciente fueron prematuridad (16,1%), bajo peso al nacer (17,7%), trisomía 21 (17,7%) y malformaciones extracardiacas (7,1%). Signos y síntomas respiratorios fueron el principal motivo de hospitalización, con disnea (55,8%), tos (30,3%) y alteraciones en la auscultación pulmonar (16,1%). Cianosis (20,3%) también motivó la hospitalización. El soplo cardíaco estuvo presente en la mayoría de los pacientes (80,0%). En un porcentaje relevante de casos, el diagnóstico se produjo durante la hospitalización (16,8%). Conclusión: El conocimiento sobre el perfil de las cardiopatías congénitas ayuda al diagnóstico, siendo necesario ampliar el conocimiento científico sobre este tema... (AU)

Objective: Describe the clinical and epidemiological profile of children with congenital heart diseases admitted between 2018 and 2019 to a referencial hospital in Pernambuco. Methods: Cross-sectional study involving 310 children with congenital cardiopathy. The data was obtained in the medical charts, using standardized forms. Tabulation was made in an Excel spreadsheet and descriptive statistical analysis done through SPSS 25 Software. Results: The average age was 21,69 months and most patients were male (55,5%). The main risk factors were infection during pregnancy (21,3%) and advanced age (15,8%). Among chronic diseases, hypertension (6,1%) and diabetes mellitus (4,2%) stood out. Predisposing factors related to the patient were prematurity (16,1%), low weight at birth (17,7%), trisomy 21 (17,7%) and extracardiac malformations (7,1%). Respiratory signs and symptoms were the main cause of hospitalization, such as dyspnea (55,8%), cough (30,3%) and changes in pulmonary auscultation (16,1%). Cyanosis also motivated admission (20,3%). Most patients presented heart murmur (80%). In a significant amount of cases, the diagnosis was made during the hospital admission (16,8%). Conclusion: the awareness about the profile of congenital heart diseases helps the diagnosis, and is necessary to expand scientific knowledge on this topic... (AU)

Implicações da longa hospitalização às cuidadoras de crianças adoecidas cronicamente: atuação do serviço social / Implications of long hospitalization for the caregivers of chronically sick children: social service performance / Implicaciones de la hospitalización prolongada para los cuidadores de niños con enfermedades crónicas: desempeño en los servicios sociales

Objetivo: descrever as implicações do longo período de hospitalização às dimensões psicológica e social das cuidadoras de crianças com condições crônicas complexas de saúde. Método: pesquisa qualitativa realizada com cuidadoras de crianças adoecidas cronicamente em longa hospitalização em um hospital pediátrico na Bahia. A coleta de dados foi realizada no período entre 23 de fevereiro e 09 de março de 2021, remotamente, por meio de entrevista semiestruturada. Para sistematizar os dados utilizou-se análise de conteúdo. Resultados: participaram do estudo seis cuidadoras. E emergiram quatro categorias de análise: Afastamento da rede de suporte sociofamiliar; Dores psicossociais que permeiam a internação hospitalar; (Des) Humanização do Cuidado; e Importância da atuação do profissional de Serviço Social. Conclusão: identificou-se a necessidade de uma atuação profissional que atenda a família de forma integral, condizente com o enfrentamento qualificado à redução dos danos causados pela longa hospitalização infantil, no intuito de valorizar a humanização do cuidado.

Objective: to describe the implications of the long period of hospitalization for the psychological and social dimensions of caregivers of children with complex chronic health conditions. Methodo: qualitative research carried out with caregivers of chronically ill children in long hospitalization in a pediatric hospital in Bahia. Data collection was carried out in the period between February 23 and March 9, 2021, remotely, through a semi-structured interview. To systematize the data, content analysis was used. Results: six caregivers participated in the study. And four categories of analysis emerged: Withdrawal from the socio-family support network; Psychosocial pains that permeate hospital admission; (Des) Humanization of Care; and Importance of the performance of the Social Work professional. Conclusion: it was identified the need for a professional action that attends the family in an integral way, consistent with the qualified confrontation to the reduction of the damages caused by the long hospitalization of children, in order to value the humanization of care.

Objetivo: describir las implicaciones del largo período de hospitalización para las dimensiones psicológicas y sociales de los cuidadores de niños con condiciones crónicas complejas de salud. Metodo: investigación cualitativa realizada con cuidadores de niños con enfermedades crónicas en hospitalización prolongada en un hospital pediátrico de Bahia. La recolección de datos se realizó en el período comprendido entre el 23 de febrero y el 9 de marzo de 2021, de forma remota, a través de una entrevista semiestructurada. Para sistematizar los datos se utilizó el análisis de contenido. Resultados: seis cuidadores participaron del estudio. Y surgieron cuatro categorías de análisis: Retiro de la red de apoyo sociofamiliar; Dolores psicosociales que permean el ingreso hospitalario; (Des) Humanización del Cuidado; e Importancia de la actuación del profesional de Trabajo Social. Conclusión: se identificó la necesidad de una actuación profesional que atienda a la familia de forma integral, coherente con el enfrentamiento calificado a la reducción de los daños causados por la larga hospitalización de los niños, para valorizar la humanización del cuidado.

Linfohistiocitosis hemofagocítica secundaria a infección crónica activa por virus de Epstein-Barr en un hospital pediátrico en México: series de casos y revisión de la literatura / Hemophagocytic lymphohistiocytosis secondary to chronic active Epstein-Barr virus infection in a pediatric hospital in Mexico: case series and literature review

INTRODUCCIÓN: La linfohistiocitosis hemofagocitica (HLH) secundario está asociada a enfermedades malignas, genéticas o autoinmunes, pero también a infecciones principalmente EBV hasta en un 70%, sin embargo hay poca información. Esta entidad se caracteriza por un curso variable y recurrente que conlleva a una alta morbimortalidad con complicaciones potencialmente mortales. OBJETIVO: Describir las características clínicas y evolución de los pacientes pediátricos con diagnóstico de HLH secundario a CAEBV. RESULTADOS: Se incluyeron 7 pacientes, edad media al diagnóstico fue 52 meses con predilección al sexo masculino. Todos los pacientes fueron tratados con un régimen quimioterapéutico multiagente, que incluye corticosteroide, etopósido y Ciclosporina. Después del tratamiento 6 pacientes presentaron remisión y uno de ellos reactivación. La media de seguimiento fue 19 meses y la supervivencia libre de enfermedad (SLE) 16 meses. CONCLUSIÓN: Podemos observar que el curso clínico es variable en ocasiones fulminantes y con pobre respuesta al tratamiento. Un diagnóstico temprano, así como detectar los factores pronóstico podría ayudar a adaptar estrategias de tratamiento que cambiaría la evolución clínica.

INTRODUCTION: Secondary hemophagocytic lymphohistiocytosis (HLH) is associated with malignant, genetic or autoimmune diseases but also with infections mainly EBV in up to 70%, however there is little information. This entity is characterized by a variable and recurrent course that leads to high morbidty and mortality with life-threatening complications. OBJECTIVE: To describe the clinical characteristics and evolution of pediatric patients with a diagnosis of HLH secondary to CAEBV. RESULTS: 7 patients were included, mean age at diagnosis was 52 months with a predilection for males. All patients were treated with a multiagent chemotherapeutic regimen, including corticosteroid, etoposide, and cyclosporine. After treatment, 6 patients presented remission and one of them had reactivation. The mean follow-up was 19 months and disease-free survival (DFS) 16 months. CONCLUSION: We can observe that the clinical course is variable, sometimes fulminant and with poor response to treatment. An early diagnosis as well as detecting prognostic factors could help to adapt treatment strategies that would change the clinical course.

Seroprevalencia de anticuerpos anti SARS-CoV-2 en médicos de un hospital pediátrico / Seroprevalence of SARS-CoV-2 antibodies among physicians from a children's hospital

Introducción. En pocos meses, la enfermedad por coronavirus 2019 (COVID-19) se transformó en una pandemia, alcanzando millones de casos y centenas de miles de muertos. Por la enorme capacidad de contagio, el personal de salud se encuentra más expuesto a contraerla. Sin embargo, aún hay muy poca información al respecto, particularmente, entre pediatras.Objetivo. Evaluar la seroprevalencia de anticuerpos anti SARS-CoV-2 en médicos de un hospital pediátrico, a 3 meses del primer caso en la Argentina. Explorar si algunas características demográficas, profesionales y epidemiológicas son factores de riesgo para presentar seropositividad para SARS-CoV-2.Métodos. Estudio transversal, con médicos seleccionados aleatoriamente de la nómina de un hospital pediátrico. En todos, se pesquisaron anticuerpos anti SARS-CoV-2por quimioluminiscencia (inmunoglobulinas G/M -IgG/IgM-) y se recogieron antecedentes epidemiológicos (edad, lugar de residencia, categoría profesional, contacto con enfermos), para explorar asociación entre los predictores y seropositividad.Resultados. Se incluyeron 116 médicos, con una edad promedio de 45,6 ± 13,3 años. El 62,9 % eran médicos de planta, y el resto, residentes. El 42,2 % prestaban servicios en áreas dedicadas a la asistencia directa de pacientes con COVID-19.Cuatro (el 3,5 %) refirieron contacto con enfermos sin la debida protección, y 6 (el 5,2 %), viaje previo a zonas de riesgo. Solo se identificaron anticuerpos anti-SARS-CoV-2 (IgG) en un profesional. Debido a ello, no se pudo evaluar asociación entre los potenciales predictores y la presencia de anticuerpos anti-SARS-CoV-2.Conclusión. Se encontró que solo el 0,9 % de los médicos de un hospital pediátrico presentaban anticuerpos anti-SARS-CoV-2.

Introduction. In just a few months, coronavirus disease 2019 (COVID-19) has become a pandemic, causing millions of cases and hundreds of thousands of deaths. Due to its high infectiousness, the health care staff is even more exposed. Nevertheless, there is still very limited information about it, especially among pediatricians.Objective. To assess the seroprevalence of SARS-CoV-2 antibodies among physicians from a children's hospital 3 months after the first case in Argentina. To explore if certain demographic, occupational, and epidemiological characteristics are risk factors for SARS-CoV-2 seropositivity.Methods. Cross-sectional study of physicians randomly selected from the list of workers of a children's hospital. All of them were screened for SARS-CoV-2 antibodies by chemiluminescence (immunoglobulins G/M [IgG/IgM]) and their epidemiological history was collected (age, place of residence, professional category, contact with infected people) in order to explore the association between predictors and seropositivity.Results. A total of 116 physicians were included; their average age was 45.6 ± 13.3 years. Of them, 62.9 % were staff physicians, and the rest, residents; 42.2 % worked in areas designated for direct care of COVID-19 patients. Four (3.5 %) referred contact with infected people without the appropriate protection, and 6 (5.2 %), having traveled to risk areas. SARS-CoV-2 antibodies (IgG) were only detected in one of the professionals. Because of this, it was impossible to assess the association between potential predictors and the presence of SARS-CoV-2 antibodies.Conclusion. It was observed that only 0.9 % of the physicians from a children's hospital had SARS-CoV-2 antibodies

Esa diaria gotera de la muerte: Mortalidad infantil y los albores de la medicina pediátrica en la provincia de Santiago, Chile, 1870-1913 / That daily trickle of death: Infant mortality and the dawn of pediatric medicine in the province of Santiago, Chile, 1870-1913

RESUMEN Este artículo aborda el problema de la mortalidad infantil en la provincia de Santiago, Chile, y el desarrollo de la medicina pediátrica durante la segunda mitad del siglo XIX e inicios del XX, a través de especialistas que contribuyeron a organizar los conocimientos y prácticas que estructuraron su ejercicio profesional. Para emprender este objetivo y sistematizar este nuevo campo médico, se analizan los antecedentes relativos a la formación de la Facultad de Medicina y el quiebre que representó la aparición de una asignatura dedicada a las enfermedades de la niñez. La investigación se encuentra respaldada en diversas fuentes históricas, entre ellas, la prensa escrita, bibliografía médica, memorias de titulación y el Anuario Estadístico de la República de Chile. La inauguración de los hospitales de niños expresa una institucionalidad, en la que los facultativos posicionaron su labor, pusieron en práctica los tratamientos científicos y, lo más importante, se convirtieron en espacios que permitieron la disminución de la mortalidad infantil.

ABSTRACT This article deals with the problem of infant mortality in Santiago, Chile, and the development of pediatric medicine during the second half of the nineteenth century and the beginning of the twentieth century. Emphasis is placed on the specialists who contributed to organizing the knowledge and practices that structured their professional field. In order to pursue the objective and systematize this new medical field, our analysis suggests the decisive role of the establishment of the Faculty of Medicine and the appearance of coursework dedicated specifically to childhood diseases. Our research is based on various historical sources including the press, medical literature, thesis archives, and the Anuario Estadístico de la República de Chile [Statistical Yearbook of the Republic of Chile]. Likewise, the inauguration of children's hospitals expresses an institutional setting where physicians position their work, put scientific treatments into practice, and most importantly, they become spaces that allow for the reduction of infant mortality.

Factores sociodemográficos y clínicos asociados a la satisfacción usuaria de cuidadores en un hospital pediátrico de alta complejidad / Sociodemographic and clinical factors associated with caregivers' satisfaction in a tertiary pediatric hospital

INTRODUCCIÓN: La calidad y seguridad de la atención constituyen pilares fundamentales del sistema de salud, basándose en el respeto por la dignidad y autonomía de los usuarios. Esto demanda que la atención considere características propias de las personas al evaluar su satisfacción con sus servicios; sin embargo, las encuestas de satisfacción usuaria suelen indagar solamente en generalidades como infraestructura y tiempos de atención. EL OBJETIVO de este trabajo era evaluar los factores socio-demográficos y clínicos asociados a la satisfacción usuaria de padres/cuidadores en un hospital pediátrico de alta complejidad en Santiago, Chile. MATERIALES Y MÉTODOS: Se aplicó la encuesta Pediatric Acute Care, adaptada al castellano, a 304 padres/cuidadores de pacientes pediátricos. Se analizó el comportamiento psicométrico del instrumento, y se aplicó un modelo lineal generalizado para evaluar las características sociodemográficas y clínicas asociadas al puntaje de satisfacción usuaria. RESULTADOS: Los padres/cuidadores que perciben la salud del niño/a como "buena" presentan, en promedio, 4,64 puntos más de satisfacción en comparación a quienes consideran la salud como "mala" (IC95% 0,9 ­ 8,38; p=0,015). Del mismo modo, a medida que aumenta la edad del niño/a en un mes, la satisfacción aumenta en 0,026 puntos (IC95% 0,01 ­ 0,041; p=0,001). No obstante, la satisfacción disminuye en 0,06 puntos por cada día que el niño/a pasa hospitalizado/a (IC95% -0,69 ­ -0,003; p=0,034), ajustando por otras variables. DISCUSIÓN: La satisfacción usuaria de padres/cuidadores de niños/as hospitalizados está asociada a características personales de los mismos. Los profesionales de la salud deben considerar estas características con el objetivo de otorgar una atención de calidad, ajustada a las necesidades de los usuarios.

INTRODUCTION: Assuring the quality of care and patient safety are central pillars of health sys-tems, in order to respect patients' dignity and autonomy. On the basis of these principles, healthcare systems should consider users' personal characteristics to evaluate their satisfaction with services; however, most user satisfaction surveys only ask about general issues, such as infrastructure and wait times. THE OBJECTIVE of this study was to evaluate socio-demographic and clinical factors related to parent/caregiver's user satisfaction in a tertiary pediatric hospital located in Santiago, Chile. MATERIALS AND METHODS: The Pediatric Acute Care questionnaire was adapted and applied to 304 parents/caregivers. Psychometric characteristics were evaluated, and a generalized linear model was applied to obtain socio-demographic and clinical factors related to the user satis-faction score. RESULTS: Parents/caregivers who perceive their child's health as 'good' obtained, on average, 4.64 more satisfaction points than those who consider their child's health as 'bad' (IC95% 0.9 ­ 8.38; p=0.015). Likewise, as a child's age increases by one month, satisfaction increases by 0.0026 points (IC95% 0.01 ­ 0.041; p=0.001). Nonetheless, each additional day a child is hospitalized decreases user satisfaction by 0.06 points (IC95% -0.69 ­ -0.003; p=0.034), holding other variables constant. DISCUSSION: User satisfaction is associated with parents/caregivers' personal characteristics. Health workers should consider these characteristics in order to deliver better care, adjusted to their users' needs

Sobrevida en trasplante renal en el Hospital Nacional de Niños / Survival of kidney transplant at the National Children's Hospital

Resumen Objetivo: conocer la sobrevida del programa de trasplante renal en el Hospital Nacional de Niños, de enero 1978 a enero 2016. Métodos: estudio retrospectivo y descriptivo, en niños que recibieron un trasplante renal. Se recopiló la información de los expedientes clínicos. Se incluyeron pacientes menores de edad que tuvieran un injerto viable por al menos tres meses, pacientes con expediente pasivo completo y que brindaran el consentimiento informado. Resultados: se recopiló un total de 152 pacientes, y se incluyeron 143 en el estudio, ya que 9fueron excluidos. El 51 % (n= 73) fueron mujeres. Se realizó 167 trasplantes renales, el 63,5 % (n=105) fue de injertos provenientes de donante vivo relacionado. La sobrevida al primer año fue del 100 %, el 95 % a los 10 años y el 61% a los 20 años del trasplante. En cuanto a la sobrevida del injerto, se encontró una sobrevida al primer año del 95 %, del 76 % a los 3 años y del 73 % a los 5 años después del trasplante, con una incidencia de rechazo agudo del 28,7 %. Conclusión: el trasplante renal en niños es un procedimiento muy complejo donde la sobrevida depende de múltiples factores ambientales y adquiridos; sin embargo, sí es posible que centros pediátricos como el nuestro puedan llegar a alcanzar porcentajes de sobrevida acordes a los de centros de países desarrollados.

Abstract Objective: to know the survival of the renal transplant program at the National Children's Hospital, from January 1978 to January 2016. Methods: retrospective and descriptive study in children who received a kidney transplant. The information was compiled from the clinical files. We included children who had a viable graft for at least three months, patients with a complete passive file and who provided informed consent. Results: A total of 152 patients were collected, and 143 were included in the study, since 9 were excluded. 51% (n = 73) were women. A total of 167 kidney transplants were performed, 63.5% (n = 105) were grafts from a related living donor. Survival at the first year was 100%, 95% at 10 years and 61% at 20 years after transplantation. Regarding the survival of the graft, a survival rate of 95% was found in the first year, 76% at 3 years and 73% at 5 years after transplantation, with an incidence of acute rejection of 28.7%. Conclusions: Kidney transplantation in children is a very complex procedure where survival depends on multiple environmental factors and / or acquired, however it is possible that pediatric centers like ours can reach survival rates according to centers in developed countries.

Processo educativo para preparo de familiares de crianças com necessidades especiais de saúde no cuidado transicional hospital-casa / Educational process to prepare relatives of children with special health needs in transitional home-hospital care

Objetivos: identificar as demandas de aprendizagem dos familiares de com necessidades especiais de saúde na transição do hospital para casa. Desenvolver o processo educativo com os familiares de crianças com necessidades especiais de saúde na transição do hospital para casa. Discutir o processo educativo como estratégia de preparo dos familiares de CRIANES na transição do hospital para casa. Método: estudo qualitativo desenvolvido a partir do Método Criativo Sensível, realizado entre fevereiro e junho de 2018, na Unidade de Pacientes Internos de um hospital público de pediatria localizado na cidade do Rio de Janeiro. O procedimento de geração de dados ocorreu por meio da dinâmica de Criatividade e Sensibilidade do Almanaque, com o desenvolvimento do processo educativo dialógico em quatro encontros grupais que reuniu nove familiares cuidadores de crianças com necessidades especiais de saúde em transição do hospital para casa. Os dados foram avaliados por meio da análise de discurso francesa, em suas três etapas, sendo a primeira: constituição do corpus textual em material empírico bruto como fonte primária, que foi transformada em objeto discursivo. Na segunda, o objeto discursivo apontou as pistas indicadoras dos dispositivos analíticos e, na terceira etapa, ocorreu a passagem do objeto discursivo para o processo discursivo. Nas demandas de aprendizagem sobre os direitos sociais das crianças, foram apresentadas dúvidas relativas aos benefícios sociais das CRIANES e os direitos da criança. O processo educativo dialógico deu voz aos familiares de CRIANES, porém, sem esgotar a relação eu-tu e incentivando o intercâmbio entre diferentes leituras sobre as demandas trabalhadas. Conclusão: O processo educativo é uma estratégia adequada para preparar os familiares de crianças com necessidades especiais de saúde na transição hospital-casa, no qual os enfermeiros atuam como coordenadores, sugerindo um conteúdo programático mínimo. Essa pesquisa pretende contribuir com o processo educativo realizado pelo enfermeiro, de modo que os familiares cuidadores sejam ouvidos e, a partir da reflexão, compartilhem seus saberes e dúvidas, tornando-os mais seguros para realizar os cuidados em casa.

Aims: to identify the learning demands of family members of Children with Special Health Care Needs (CSHCN) on transitioning from the hospital to home. To develop the educational process with family members of CSHCN on transitioning from hospital to home and to analyze the educational process as an strategy to prepare family members of CSHCN on transitioning from the hospital to home. To discuss the educational process as a strategy to prepare family members of CSHCN on transitioning from the hospital to home. Method: qualitative study developed through Creative and Sensitive Method, from February to June 2018, in the Internal Patient Unit of a public hospital specialized in Pediatrics located in the city of Rio de Janeiro. Data generation procedures occurred through four Creativity and Sensitivity Dynamics of Almanac, with the development of the dialogical educational process in four group meetings that brought together nine family members of children with special health care needs in transition from the hospital to home. Data were analyzed through French discourse analysis in its three steps, the first being: constitution of the textual body in a raw empirical material as a primary source, which was transformed in a discursive object. In the second, the discursive object pointed to the indicator clues of the analytical devices and, in the third step, the passage of discursive object to the discursive process occurred. This study's theoretical references were Paulo Freire, with the conscientization theory, and Afaf Meleis, with the situational and organizational transition theory. Results: family members shared learning demands from clinical and social origins, in which the first ones are related to existing typology, being: clinically complex, technological, modified habitual, medicative, developmental and mixed. On learning demands about social rights of children, doubts related to CSHCN social benefits and children's rights were presented. The dialogical educational process evidenced the relatives of CSHCN but without exhausting the me-you relationship and encouraging the exchange between different readings on the demands worked out. Conclusion: the educational process is an adequate strategy to prepare the families of children with special health needs in the hospital-home transition, in which nurses act as coordinators, suggesting a minimal programatic content. This research intends to contribute to the educational process carried out by the nurse, so that the family member caregivers are heard and, from the reflection, share their knowledge and doubts, making them safer to perform care at home.

Sobrevida global de pacientes con leucemia aguda en el Hospital de Especialidades Pediátricas de Chiapas, México / Childhood acute leukemia overall survival at the Hospital de Especialidades Pediátricas in Chiapas, México

Resumen: Introducción: A 10 años de la fundación del Hospital de Especialidades Pediátricas en Chiapas, México, es importante valorar la sobrevida global a 5 años de los pacientes con leucemia aguda bajo el régimen del Seguro Popular. Métodos: Estudio descriptivo y de sobrevida de 210 casos de leucemia aguda diagnosticados y tratados entre 2008 y 2012. Empleando curvas de Kaplan-Meier se analizó cada variedad de la enfermedad (B, T y mieloide), y para la leucemia B en función del grupo de riesgo, el sexo, la edad, los leucocitos al diagnóstico, los marcadores de superficie, el índice de DNA, el cariotipo y las translocaciones. Resultados: La edad, el sexo y la proporción de tipos de leucemia aguda (B = 85%; M = 10%; T = 5%) fueron similares al resto del país. El 20% de los pacientes estaban vivos a 5 años; el 53% habían fallecido y el 27% abandonaron el tratamiento. La sobrevida global a 5 años fue del 42% (B = 45%; T = 20%; M = 10%) (mediana: 38.8 meses; intervalo de confianza del 95%: 28.9-48.7). La mediana de «muy alto riesgo¼ fue de 7.7 contra 47 meses; no hubo diferencia entre riesgo habitual y alto riesgo. Los leucocitos < 50,000/µl al diagnóstico y CD10 positivo se asociaron con mejor sobrevida. En el momento del deceso, el 29% se encontraba en remisión. Conclusiones: La sobrevida de la leucemia aguda bajo el Seguro Popular fue desfavorable los primeros 5 años del Hospital de Especialidades Pediátricas. Se identificaron como contribuyentes la alta tasa de mortalidad temprana, de pacientes en remisión y el abandono. Además de revisar la atención médica, se requiere el estudio de elementos extrahospitalarios determinantes del abandono para mejorar el programa.

Abstract: Background: At the 10th anniversary of the Hospital de Especialidades Pediátricas in Chiapas, Mexico, it was important to assess the 5-year acute leukemia overall survival under the Seguro Popular program (Popular Insurance). Methods: A descriptive and survival study of 210 acute leukemia patients diagnosed and treated during 2008-2012 was performed. Kaplan-Meier survival curves were developed for all patients, each leukemia type (B, T and myeloid) and for B type related to risk group, age, sex, leukocytes, cell markers, DNA index, karyotype, and translocations. Results: Age, gender and proportion of leukemia types (B = 85%; M = 10%; T = 5%), were similar to other parts of the country. At the end of the 5-year treatment, 20% of the patients were alive, 53% had died and 27% had abandoned the treatment. Global survival was 42% (B = 45%; T = 20%; M = 10%) (median: 38.8 months; confidence interval of 95% = 28.9-48.7). Very high-risk median survival was 7.7 versus 47 months. There was no difference between standard and high-risk groups. The initial leukocyte count < 50,000/µL and CD10 positive were related to better B survival; no other variables were related. At the time of death, 29% of patients were in remission. Conclusions: Global survival of acute leukemia at Hospital de Especialidades Pediátricas under the Seguro Popular during its first 5 years was surprisingly poor given the medical resources available through the insurance. Early mortality, death during remission and high desertion rates contributed to these results. A detailed revision of treatment protocols and reasons for abandoning treatment is mandatory.

Unidad de terapia intensiva pediátrica II: repercusiones en el intercambio asistencial de la Red Pediátrica / Pediatric intensive care unit II: impact on the in-network pediatric health care exchange

INTRODUCCIÓN En el año 2012 como consecuencia de la necesidad asistencial de generar nuevas camas en terapia intensiva pediátrica se creó la Unidad de Cuidados Intensivos pediátricos II (UTIP II) que se dedicó principalmente a la asistencia de pacientes con necesidades especiales de atención médica, con una repercusión en el intercambio asistencial y sus consecuencias indirectas en la red pediátrica no estudiadas hasta la fecha. OBJETIVOS El objetivo de nuestro estudio es analizar las repercusiones en el intercambio asistencial con la red pediátrica en la unidad de terapia intermedia pediátrica (CIPED) como consecuencia de la creación de la UTIP II. METODOS Estudio observacional, retrospectivo realizado en la CIPED del HEC, desde enero de 2009 a diciembre de 2016. Se evaluaron el náµ'/% de derivaciones aceptadas respecto a las solicitadas, origen de los pacientes (Red/Extrared/HEC), náµ' de egresos, % de ocupación de camas, giro cama. RESULTADOS Se observa un aumento en los rechazos de solicitudes de ingreso a CIPED a partir de 2013(p de tendencia <0,000001); comparando el período 2009/2012 (pre UTIP 2) con el período 2013/2016 considerando el origen de los pacientes ingresados a CIPED, se observa un aumento en los ingresos directos desde el HEC y un descenso de los ingresos procedentes de los hospitales de la red (p <0,000001) y un porcentaje creciente de pacientes que egresan directamente desde UTIP. El porcentaje de ocupación de cama resulto alto en los tres sectores mientras que el giro cama es bajo, intermedio y alto en la UTIP2, UTIP y CIPED respectivamente. CONCLUSIONES los indicadores evaluados alertan acerca de una disminución en la respuesta a las necesidades asistenciales de la red pediátrica desde la CIPED del HEC y evidencian ineficiencias en el sistema que atentan contra la calidad asistencial y profundización de las relaciones en la red.

INTRODUCTION The Pediatric Intensive Care Unit II (PICU II) was created in 2012,as a result of the health care need to generate new beds in pediatric intensive care. It was devote d mainly to provide care to patients with special health care needs and had an impact on health care exchange and its indirect effects in the pediatric network, which have not been studied to date. Our study aims at examining the impact of creating the PICU II on the health care exchange with the pediatric network in the pediatric intermediate care unit (PIMCU). METHODS Retrospective observational study by the PIMCU of HEC from January 2009 to December 2016. Number/percentage of accepted referrals versus requested referrals, sources of patients' referrals(In-network/ Out-of-network/ HEC), number of discharges, % of bed occupancy and bed turnover rate were evaluated. RESULTS Increased denials in admission requests to the PIMCU are observed from 2013 (P for trend <0.000001). Comparing the 2009/2012 period (pre-PICU 2) with the 2013/2016 period and considering the sources of patients admitted to the PIMCU, increased direct admissions to PIMCU, decreased admissions of patients from in-network hospitals (p <0.000001) and an increased percentage of patients discharged directly from the PICU are observed. Bed occupancy percentage was high in the three sectors while the bed turnover was low, intermediate and high in PICU2, PICU and PIMCU, respectively. CONCLUSIONS Evaluated indicators warn about a diminished response by HEC's PIMCU to pediatric network's healthcare needs and evidence system inefficiencies that target healthcare quality and relationship deepening in the network.

Governança e suporte da rede social secundária na atenção à saúde de crianças e adolescentes com doenças crônicas / Governance and support from the secondary social network in health care for children and adolescents with chronic diseases

Resumo Estudo de abordagem qualitativa com o objetivo de analisar as características estruturais dos sistemas de governança e suporte ofertado pela rede social secundária na atenção à saúde de crianças e adolescentes com doença crônica. Pesquisa realizada em unidades da Estratégia Saúde da Família, ambulatório especializado e hospital público pediátrico de João Pessoa - PB, de fevereiro a outubro de 2013, por meio de entrevista semiestruturada e grupo focal. Participaram do estudo: 06 gestores, 14 profissionais de saúde e 12 familiares cuidadores de crianças ou adolescentes com doenças crônicas. Os dados foram analisados seguindo-se os princípios da análise temática de conteúdo. Na atenção à saúde das crianças e adolescentes com doenças crônicas evidenciou-se o sistema de governança do tipo colaborativo, bem como limitações da governança pública do tipo gerencial, que fragilizam a rede social secundária com repercussões no suporte oferecido aos familiares e na articulação entre os serviços. Conclui-se que essa realidade pode apresentar impacto negativo na qualidade e efetividade do cuidado prestado às crianças e adolescentes em condição crônica, por não atender as reais necessidades dessa população.

Abstract The objective of this qualitative study was to analyze the structural characteristics of the governance system and support offered by the secondary social network in health care for children and adolescents with chronic diseases. The study was carried out at Family Health Strategy (FHS) units, a specialized outpatient clinic, and a public pediatric hospital in João Pessoa, Paraiba, Brazil, from February to October 2013, using semi-structured interviews and focus groups. The participants included six managers, 14 health professionals, and 12 family caregivers of children or adolescents with chronic diseases. The data were analyzed according to the principles of thematic content analysis. The governance system found in health care for children and adolescents with chronic diseases was collaborative. Additionally, the limitations of managerial public governance were clear, weakening the secondary social network with repercussions regarding the support offered to the family and cooperation between services. This reality can have a negative impact on the quality and effectiveness of the care provided to children and adolescents with chronic conditions, as it does not meet the real needs of this population.

Análisis de las interconsultas con dermatología pediátrica de pacientes hospitalizados en un hospital pediátrico universitario / Analysis of pediatric dermatology inpatient consultations in a pediatric teaching hospital

Introducción. Las dermatosis son frecuentes en niños. Nuestro objetivo fue describir las interconsultas con dermatología de niños hospitalizados. Población y métodos. Se analizaron las solicitudes de interconsultas con dermatología pediátrica de 539 pacientes consecutivos (de 0 a 18 años de edad) entre enero de 2004 y abril de 2010; para determinar en la interconsulta, el grupo de dermopatías, diagnóstico principal, departamento solicitante, patrón diagnóstico, modalidad de tratamiento y derivación a otro departamento. Resultados. De 539 niños hospitalizados, 310 (57, 51%) eran varones y 229 (42, 49%), mujeres. El departamento de pediatría general (37, 5%), fue el que consultó más frecuentemente, seguido por oncología (15, 6%) y cirugía pediátrica (11%). La mayoría (32%) habían sido hospitalizados por una dermopatía o enfermedad relacionada. Las alergias cutáneas (47%) fueron las principales dermatosis consultadas, seguidas por enfermedades infecciosas (14, 7%) y trastornos sistémicos con manifestaciones cutáneas (10, 2%). La dermatitis atópica (7, 4%) y el eccema sin clasificar (7, 4%) fueron las dermatosis más frecuentes, seguidos de la urticaria papulosa (5, 4%). En el 80% de los pacientes, el diagnóstico fue clínico; requirieron biopsia cutánea el 15, 9% y análisis de laboratorio el 4%. El 51% de los pacientes requirió tratamiento local, el 6%, tratamiento sistémico, el 31%, sistémico combinado y ningún tratamiento en el 11, 1%. Se derivó a otro departamento al 2% de los pacientes. Conclusiones.Este estudio obtuvo datos importantes sobre los trastornos de piel y su tratamiento en niños hospitalizados desde la perspectiva de la interconsulta.

Introduction. Although skin diseases are associated with low rate of hospitalization, dermatological manifestations are frequent in hospitalized patients. The aim of the study was to describe the inpatient dermatological consultations in a pediatric teaching hospital. Population and Methods. Recorded data from inpatient pediatric dermatology consultation requests on a total of 539 consecutive inpatients (aged 0-18 years) from January 2004 to April 2010 were analyzed for consult diagnosis, dermatological disease group, primary diagnosis, requesting department, diagnostic pattern, treatment modality and referral to another department. Results. Of the 539 inpatients, 310 (57.51%) were males and 229 (42.49%) were females. The most frequent requesting department was general pediatrics (37.5%) followed by oncology (15.6%) and pediatric surgery (11.1%). Most of the patients (32.1%) had been hospitalized for dermatological or related disease followed by acute lymphoblastic leukemia (4.1%), chronic renal failure (2.6%), bronchopneumonia (2.6%) and epilepsy (2.4%). Allergic skin diseases (47.1%) were the leading group of dermatoses, which were followed by infectious diseases (14.7%), and systemic diseases with cutaneous manifestations (10.2%). Atopic dermatitis (7.4%) and unclassified eczema (7.4%) were the most frequent dermatoses followed by papular urticaria (5.4%). Most of the patients (80.0%) had diagnosis on clinical basis, whereas skin biopsy was performed in 15.9% and laboratory investigation in 4.1% of the patients. Local treatment was applied to 50.8% of the patients, systemic treatment to 5.8%, local and systemic treatment together to 31.0% while no treatment was given to 11.1%. Only 1.9% of the patients were referred to another department. Conclusions. This study provided important data on the spectrum of skin disorders and their management in pediatric inpatients from the consultation perspective in a pediatric teaching hospital with multispecialty clinics.

Resultado de un modelo de gestión de vacunas especiales / Result of a model of management of special vaccines

Resumen Introducción: Los pacientes pediátricos con recomendaciones especiales de vacunación son una po blación creciente. El Ministerio de Salud de Chile posee un programa de vacunación especial para estos casos, al cual nuestro hospital gestiona solicitudes de vacunas a través de un flujograma esta blecido. Objetivo: Describir los resultados del modelo de gestión de vacunas especiales, marzo de 2015 a septiembre de 2016, y caracterizar a la población beneficiada por este programa. Pacientes y Método: Estudio observacional, descriptivo. Incluye a la población de pacientes crónicos atendidos en el Hospital Dr. Exequiel González Cortés (HEGC) con vacunas solicitadas al programa ministerial de vacunas especiales, período marzo 2015 a septiembre 2016. La información se obtuvo de las bases de datos de los registros de solicitudes y monitorización de los esquemas especiales de vacunas del Programa Nacional de Inmunizaciones (PNI). Los pacientes se clasificaron en crónicos ambulato rios, ambulatorios y hospitalizados. Para la caracterización clínica y demográfica se describieron las variables de edad, sexo, previsión de salud, especialidad médica que solicitó la vacuna, cronicidad y vacunas administradas. Para medir los resultados del modelo de gestión de vacunas especiales se utilizaron indicadores: Autorización de esquema de vacunación por el PNI, Esquemas de vacunación completados, Tiempo de repuesta del PNI y Oportunidad de vacunación. Resultados: Se gestionaron un total de 367 esquemas de vacunas a 215 pacientes, administrándose en el período un total de 405 vacunas. Las especialidades que más solicitaron fueron infectología (39,1%), inmuno-reumatología (24,2%) y broncopulmonar (20%). El Programa Nacional de Inmunizaciones autorizó el 97,8% de los esquemas solicitados (n = 359), el tiempo de respuesta desde la solicitud hasta la respuesta del Programa Nacional de Inmunizaciones tuvo una mediana de 15 días (rango 0-174 días), la oportu nidad de vacunación tuvo una mediana de 41 días (rango 0-287 días) y el total de esquemas com pletados al momento de tabular los resultados fue de 52,8%. Conclusiones: Las vacunas son una de las principales políticas de equidad en salud pública y en Chile existe un flujograma para solicitud de vacunas especiales, que requiere de un trabajo multidisciplinario para otorgarle cobertura a esta población infantil vulnerable.

Abstract Introduction: Special vaccines recommendation patients are a growing population. The Ministry of Health has developed a special vaccination program for these cases, through which our hospital manages vaccine forms by an established flowchart. Objective: To describe the special vaccines model of management results in the period between March 2015 and September 2016, and the clinical and demographics characterization of the pediatric population benefited with this program in Dr. Exe-quiel González Cortés Children's Hospital. Patients and Methods: We performed a descriptive ob servational study, which covers the chronically ill patient's population who received special vaccines during the period between March 2015 to September 2016. Results: A total of 367 vaccine schemes were administered to 215 patients, with a total of 405 vaccines administered during the period. The medical specialties that most requested vaccines were infectology (39.1%), immune-rheumatology (24.2%) and bronchopulmonary specialists (20%). The National Immunization Program authorized 97.8% of the requested schemes (n = 359), the response time had a median of 15 days (range 0-174 days), the vaccination opportunity had a median of 41 days (range 0-287 days) and the total of sche mes completed at the time of tabulating the results was 52.8%. Conclusions: Vaccines are one of the main public health equity policies and Chile has special vaccines request flowchart a flow chart, which requires a multidisciplinary work to provide coverage to this vulnerable child population.

Características clínicas y laboratoriales de pacientes hospitalizados con hipertensión portal y complicaciones vasculares pulmonares en el Instituto Nacional de Salud del Niño / Clinical and laboratory characteristics of patients with pulmonary hypertension and pulmonary vascular complications hospitalized at the Instituto Nacional de Salud del Niño

El síndrome hepatopulmonar (SHP) y la hipertensión portopulmonar (HTPP) son distintas complicaciones vasculares pulmonares de la hipertensión portal (HTP) y se asocian con una mayor morbilidad y mortalidad. Objetivos: Describir las Características Clínicas y Laboratoriales de los pacientes con HTP y complicaciones vasculares pulmonares hospitalizados en el Instituto Nacional de Salud del Niño. Materiales y métodos: se incluyeron los pacientes con HTP hospitalizados desde enero del 2012 hasta junio del 2013 y que durante su evolución cursaron con SHP o HTPP. Para el análisis se les dividió en un primer grupo de pacientes con cirrosis hepática y un segundo grupo con obstrucción extra hepática de vena porta. Resultados: De 22 pacientes con HTP el 45,5% fueron varones y el rango de edad fue entre 1 mes y 17 años. La etiología en el grupo de cirrosis (n=14) fue: hepatitis autoinmune (35,7%), cirrosis criptogénica (35,7%), error innato del metabolismo (14,3%), hepatitis viral crónica por virus C (7,15%) y atresia de vías biliares extra hepática (7,15%). Las complicaciones vasculares pulmonares, se presentaron más frecuentemente en los pacientes con cirrosis hepática (1 caso de síndrome hepatopulmonar y un caso de hipertensión portopulmonar). En ellos se encontró más frecuentemente disnea, astenia, edema, desnutrición, ascitis, hiperesplenismo y hemorragia digestiva por várices esofágicas, además de valores elevados de ALT, fosfatasa alcalina y menores niveles de albúmina sérica. Conclusiones: En niños con HTP, las complicaciones vasculares pulmonares son muy infrecuentes. En la evaluación de estos pacientes debería incluirse la oximetría de pulso para detectar hipoxemia y posteriormente, de ser necesario una ecocardiografía Doppler y de contraste. Ante el hallazgo de hipertensión sistólica pulmonar es necesario realizar un cateterismo cardiaco derecho.

The hepatopulmonary syndrome (HPS) and portopulmonary hypertension (PPHN) are distinct pulmonary vascular complications of portal hypertension (PHT) and are associated with increased morbidity and mortality. Objectives: To describe the clinical and laboratory characteristics of patients with pulmonary hypertension and pulmonary vascular complications hospitalized at the Instituto Nacional de Salud del Niño. Materials and methods: We included patients with HTP hospitalized from January 2012 to June 2013 and that during its evolution progressed with SHP or HTPP. For analysis, they were divided into a first group of patients with liver cirrhosis and a second group with extrahepatic portal vein obstruction. Results: Of 22 patients with HPT 45.5% were male and the age range was between 1 month and 17 years. The etiology in the group of cirrhosis (n=14) was: autoimmune hepatitis (35.7%), cryptogenic cirrhosis (35.7%), inborn error of metabolism (14.3%), chronic viral hepatitis C (7.15%) virus and atresia extra-hepatic bile ducts (7.15%). Pulmonary vascular complications more frequently occurred in patients with liver cirrhosis (1 case of HPS and a case of PPHTN). They most often dyspnea, asthenia, edema, malnutrition, ascites, hypersplenism and gastrointestinal bleeding from esophageal varices was found. Also, they had elevated ALT values, alkaline phosphatase and serum albumin values decreased. Conclusions: In children with pulmonary hypertension, pulmonary vascular complications are rare. In the evaluation of these patients pulse oximetry should be included to detect hypoxemia and subsequently a Doppler echocardiography and contrast echocardiography necessary. Dueto the finding of systolic pulmonary hypertension it is necessary to perform right heart catheterization.

Perfil socioeconómico de familias de niños diagnosticados con cáncer / Socioeconomic profiles of families of children diagnosed with cancer

INTRODUCCIÓN: El cáncer es una enfermedad que demanda grandes recursos en el área médica y psicosocial. En Chile, cada año, se diagnostica cáncer a 500 niños; la sobrevida a 5 años es similar a países de altos ingresos (75%). El ingreso económico de los países es un factor relevante dado que se correlaciona con la sobrevida de los enfermos de cáncer de forma directamente proporcional. En el caso de Chile los costos de la enfermedad están cubiertos por el Sistema de Salud. Fundación Nuestros Hijos, institución privada sin fines de lucro, asiste integralmente a los niños con cáncer atendidos en el Hospital Exequiel González Cortés, entre otros. OBJETIVO: Describir la situación socioeconómica de las familias de niños diagnosticados de cáncer en el Hospital Exequiel González Cortés, durante el año 2011. MÉTODO: Estudio observacional descriptivo. Del total de 69 niños diagnosticados ese año se incluyeron 57 niños, 12 fueron excluidos: 6 por ser recaída de enfermedad oncológica y 6 por no contar con todos los datos. RESULTADOS: el 54% [n=31) fue diagnosticado de Leucemia; la edad promedio fue de 6 años; 35% (n=20) provenía de la Región de O'Higgins, Chile; 32% (n= 18) de las madres y 95% (n=40) de los padres tenía algún tipo de trabajo remunerado; el ingreso familiar promedio mensual era equivalente a 579 dólares (por debajo del promedio nacional 1.621 dólares), per cápita de 116 dólares. El 35% de las familias compartía casa con otras familias. CONCLUSIONES: Las condiciones económicas y sociales de estas familias, podrían poner en riesgo la sobrevida de sus hijos enfermos de cáncer, si no cuentan con soporte suficiente que permitan acceder de forma apropiada al tratamiento.

INTRODUCTION: Cancer is a disease that requires a great number of medical and psychosocial resources. Each year in Chile, 500 children are diagnosed with cancer, and the 5-year survival rates are similar to those of high-income countries (75%). National income is a crucial factor, given that it is directly related to cancer survival rates. In Chile, the Health System covers the medical costs of the disease. Fundación Nuestros Hijos (Our Children Foundation), a nonprofit organization, gives comprehensive assistance to children with cancer that are treated in Hospital Exequiel Gonzáles Cortés, among other centers. PURPOSE: To describe the socioeconomic situation of families who have children diagnosed with cancer, who were treated in Hosptial Exequiel González Cortés in 2011. METHODOLOGY: For this descriptive and observational study, of the 69 children who were diagnosed with cancer in Hospital Exequiel Gonzáles Cortés during 2011, 57 were included in the study, and 12 were excluded: 6 because they were suffering relapse of a previously treated oncologica disease, and the other 6 because all of their necessary data were not available. RESULTS: Of the 57 children included in the study, 54% (n=31) were diagnosed with leukemia; the average age of the children was 6 years; and 35% (n=20) of patients came from the O'Higgins Region of Chile. Additionally, 32% (n=18) of the children's mothers and 95% (n=40) of their fathers had paid employment; the average monthly family income was equivalent to USD$579 (lower than the national average USD$1,621), and USD$116 per capita. It was found that 35% of the children's families shared their home with other families. CONCLUSIONS: These families' economic and social conditions could be a risk factor for the survival of their children with cancer, if they do not have sufficient support to access appropriate treatment.

Impacto de la enfermedad genética en los ingresos hospitalarios en un Servicio de Pediatría / Prevalence of genetic diseases in admissions to a tertiary care hospital pediatric service

Background: With the epidemiological changes, the role of genetic factors as a cause of morbidity and mortality is increasing, changing disease patterns of patients admitted to pediatric hospitals. Aim: To describe the prevalence of genetic diseases (GD) in patients admitted to a tertiary-care hospital Pediatric Service. Material and Methods: The clinical records of consecutive admissions to a Pediatric Service of a clinical hospital in 2011 were reviewed. Two categories were assigned: with GD and without GD. Both groups were compared according to days of hospitalization, type of admission, readmissions and mortality. Results: We reviewed the 98.1% of the 1,781 total annual admissions (1,459 cases), 322 of them were readmissions (187 cases). The mean age at admission was 54.8 ± 54 months and 55% were male. The mean hospitalization length was 4.9 ± 10 days. Of total admissions and individual cases, 52.7% (938/1,781) and 48% (705/1,459) were cases with GD, respectively. Within this group, 85% (597/705) were sub-categorized as having a significant genetic base. The differences between gender, age average income and hospital mortality were not significant between the two categories. Readmissions were more common for GD than for patients without GD (Odds ratio (OR): 2.6, confidence intervals (CI): 1.9-3.6). Average hospital stay was 27% higher among GD patients (p < 0.01). Conclusions: Our findings confirm the high prevalence of GD in pediatric hospitals (52.7%), with a higher risk for readmission in cases with GD compared with those without GD.

Precaução de contato: percepção dos acompanhantes de crianças internadas em unidade pediátrica / Contact precaution: the perception of people accompanying children hospitalized at a pediatric unit

Trata-se de uma pesquisa de campo, descritiva e exploratória de abordagem qualitativa, realizada na unidade pediátrica de um hospital universitário do Norte do Paraná, cujo objetivo foi analisar a percepção do acompanhante quanto à precaução de contato. Participaram vinte acompanhantes e o instrumento para coleta de dados foi composto por duas partes: a primeira destinada à obtenção de dados sociais do acompanhante e a segunda a questões norteadoras sobre a temática. Após a análise dos dados, em que se utilizou o método de interpretação dos sentidos composto por três etapas distintas, emergiram quatro categorias: "Orientações sobre a precaução de contato aos acompanhantes"; "Entendimento sobre a utilidade da precaução de contato"; "Dificuldades e facilidades na utilização da precaução de contato" e "Sentimentos em relação à vivência". A maioria demonstrou não entender a utilidade da prática e as dificuldades maiores foram relacionadas ao desconforto físico e mudança na rotina. Sentimentos como constrangimento, preconceito e humilhação foram associados à vivência. Há necessidade de aperfeiçoamento das informações fornecidas, melhor supervisão da utilização correta da paramentação e suporte emocional para as acompanhantes pelos profissionais de saúde.

This is a descriptive, exploratory and qualitative fieldwork conducted at the pediatric unit of a university hospital in northern Paraná. The purpose was to analyze the perception of people accompanying hospitalized children in regards to contact precaution. Twenty individuals participated and the instrument used for data collection had two parts: the first part was directed at obtaining the accompanying person ́s social data; and the second one contained guiding questions on the topic. After analyzing the data in which the method of interpretation of the senses was used, consisting of three distinct steps, four categories emerged: "Instructions about contact precautions to accompanying persons"; "Understanding the usefulness of contact precautions"; "Difficulties and easy aspects of using contact precautions" and "Feelings in relation to the experience". The majority demonstrated that they did not understand the usefulness of this practice, and the main difficulties were related to physical discomfort and changes in routine. Feelings such as embarrassment, humiliation and prejudice were associated with experience. It is necessary to improve the information provided, regarding the correct use of apparel, and the emotional support offered to accompanying persons by health professionals.

Caracterización del desarrollo psicomotor de niños y niñas con cáncer / Psychomotor development characterization of children with cancer

Antecedentes: El desarrollo psicomotor (DPSM) es una condicionante social de la salud, por lo que sus alteraciones pueden perpetuar otras desigualdades hasta la adultez. Los menores con cáncer se ven expuestos a una serie de factores que pueden poner en riesgo su DPSM. Metodología: Se evalúa el DPSM de 35 niños y niñas con cáncer de 0 a 5 años de dos hospitales, con los test EEDP y TEPSI, estandarizados para población chilena. Se excluyen los niños/as con características o patologías de base que pudiesen explicar el retraso del desarrollo psicomotor (tumores cerebrales, discapacidad visual, síndrome de Down o hemiparesia.). Las evaluaciones se realizan en período ambulatorio estando los niños y niñas en buenas condiciones generales, sin infecciones activas y con parámetros hematológicos estables. Es decir, en igualdad de condiciones de salud, salvo por el diagnóstico oncológico de base. Resultados: El promedio nacional de rezago es 5,5 por ciento, el de riesgo 5,64 y el retraso alcanza un 1,3 por ciento. Sumando las tres categorías alcanza un 12,44 por ciento. Los niños/as evaluados arrojan un 28,52 por ciento, 14,29 por ciento y 2,86 por ciento respectivamente, con un total de 45,67 por ciento, es decir 3,67 veces más alteraciones del DPSM que los niños sin cáncer. Conclusiones: Los niños y niñas con cáncer evaluados presentan más alteraciones del DPSM que aquellos que no tuvieron cáncer antes de los 5 años de edad. Existen iniciativas ya implementadas desde el 2007 por el Sistema de Protección Integral de la infancia para prevenir e intervenir las alteraciones del DPSM, pero parecen no se suficientes para esta población específica.

Background: Psychomotor development (PD) is known to be a social determinant of health which means that a development delay or disorder can perpetuate other inequalities into adulthood. Children with cancer are exposed to a number of factors that may jeopardize their PD. Methodology: All eligible children with cancer under 5 years were evaluated in two hospitals of Santiago, with a total n° of 35. Children with underlying conditions that may explain a developmental delay were excluded (brain tumors, visually impaired, Down Syndrome). Evaluations were performed on outpatient period, in good general conditions, meaning in equal terms than children in the general population, except for the cancer. Results: The average national lag is 5.5 percent, the risk 5.64 and the retardation reaches 1.3 percent. Adding the three categories of delay, it reaches a 12.44 percent. Children evaluated presented 28.52 percent, 14.29 percent and 2.86 percent respectively, with a total of 45.67 percent that means 3.67 times more developmental delays than children without cancer. Conclusions: Children with cancer have more PD disorders than those who did not have cancer before age 5. There are initiatives already implemented since 2007 by the System of Integral Protection of Children, with protocols to prevent and attend PD disorders, but seem to be insufficient for this specific population.

Especificidades contextuais do cuidado de enfermagem à criança em condição crônica hospitalizada / Contextual specificities of nursing care to hospitalized children with chronic condition

Objetivou-se compreender as especificidades contextuais do cuidado de enfermagem à criança em condição crônica hospitalizada. Foi utilizada a abordagem qualitativa apoiando-se nos referenciais teórico e metodológico, respectivamente, o Pensamento Complexo e a Grounded Theory. Os dados foram coletados entre julho e novembro de 2012 por meio da entrevista semiestruturada. Participaram do estudo 18 sujeitos organizados em três grupos amostrais: enfermeiros, técnicos de enfermagem e familiares. A categoria Revelando especificidades contextuais que influenciam o cuidado de enfermagem à criança em condição crônica hospitalizada e suas respectivas subcategorias apresentam os significados do cuidado de enfermagem, aspectos relacionados à hospitalização da criança em condição crônica e as percepções dos participantes acerca do contexto de cuidado. Conclui-se que as relações de cuidado e a hospitalização da criança em condição crônica configuram-se como fenômenos complexos, solicitando do enfermeiro e de sua equipe a valorização do contexto e a articulação de múltiplos saberes e práticas.

This study aimed to understand the contextual specificities of nursing care givento the hospitalized children with chronic conditions. The qualitative approach was usedbased on the theoretical and methodological frameworks, respectively, the Complex Thought and the Grounded Theory. Data were collected from July to November 2012 through semi-structured interviews. The study included 18 subjects arrangedin three sample groups: nurses, nursing technicians and family. The category Revealing contextual specificities that influence nursing care given to hospitalized children with chronic conditionsand its subcategories present the meanings of nursing care, aspects about the hospitalization of children with chronic conditions and perceptions of participants about the care context. We concluded that the care relationships and the hospitalization of children with chronic condition are characterized as complex phenomena, requiring from the nurse and the nursing team the appreciation of the context and articulation of multiple knowledge and practices.