Quality of life in home-ventilated children and their families.

HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8.2 years). Global scores in PedsQL questionnaire for subjects (median 61.4), and their parents (median 52.2) were below those of healthy children. 24.4% received medical follow-up at home and 71.8% attended school. Mothers were the main caregivers (75.6%), 48.8% of which were fully dedicated to the care of their child. 71.1% consider economic and healthcare resources insufficient. All families were satisfied with the care they provide to their children, even though it was considered emotionally overwhelming (65.9%). Marital conflict and neglect of siblings appeared in 42.1 and 36% of families, respectively. CONCLUSIONS: Perceived QOL by children with HMV and their families is lower than that of healthy children. Parents are happy to care for their children at home, even though it negatively affects family life. What is Known: • The use of home mechanical ventilation (HMV) in children has increased over the last years. • Normal family functioning is usually disrupted by HMV. What is New: • The aim of HMV is to provide a lifestyle similar to that of healthy children, but perceived quality of life by these patients and their parents is low. • Most of the families caring for children on HMV agree that support and resources provided by national health institutions is insufficient.

Cuerpo extraño bilateral en radiografía torácica / Bilateral foreign body in chest x-ray

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Traqueostomía, ¿cuándo realizarla? / Tracheostomy, when should it be performed?

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Actividad investigadora, asistencial y docente de la UCI Pediátrica del H. infantil Universitario Niño Jesús / Research, clinical and teaching activities of the Pediatric ICU of H. Universitario Niño Jesús Children

El Servicio de Cuidados Intensivos Pediátricos (UCIP) del Hospital Infantil Universitario Niño Jesús, de Madrid, es una Unidad polivalente de 14 camas, médico quirúrgica, que atiende a niños críticamente enfermos desde neonatos hasta 18 años. En los últimos seis años ha desarrollado un ambicioso programa investigador, asistencial y docente que se resume en el presente trabajo. En este periodo es la UCIP que más número de pacientes ha atendido en al Comunidad de Madrid, especialmente pacientes complejos, como niños oncológicos sometidos a trasplante de progenitores hemaopoyéticos o no; pacientes politraumatizados atendidos por un equipo multidisciplinar; niño sépticos; pacientes con patología neurológica sometidos a monitorización multiparamétrica avanzada; pacientes con patología respiratoria sometidos a diferentes formas de ventilación mecánica y otros. Se han desarrollado varias líneas de investigación clínica cuyos resultados se han publicado en diversas revistas científicas nacionales e internacionales. La actividad docente en este periodo ha sido muy amplia, basada en cursos teóricos-prácticos con simuladores, que ha contribuido a la formación de miles de pediatras. Producto de la experiencia asistencial, docente e investigadora se han editado 10 libros (AU)

The Paediatric Intensive Care Unit (PICU) of Hospital Infantil Universitario Niño Jesús is a polyvalent, surgical and medical 14 bed unit who assists critically ill patients since newborn age to 18 year-old. During the last 6 years we´ve developed an ambitious investigational, educational and clinical management programme that it´s summarized in the present paper. During this period of time our unit has got the highest admission rate in the whole Madrid area. The main pathological conditions attended are: oncological patients with and without bone marrow transplantation; multidisciplinary integrated management for the polytrauma patients; septic shock; neurological impaired patients under multiparameter advanced monitoring; respiratory failure under invasive or non invasive ventilation support. Many clinical investigations have been developed and published in several international and national journals. Thousands of paediatric physicians have accomplished our multiple simulation training programmes. As a result of our clinical, educational and investigational activity ten books have been published (AU)

Bronquiolitis grave. Cambios epidemiológicos y de soporte respiratorio / Severe bronchiolitis. Changes in epidemiology and respiratory support

Introducción: La bronquiolitis genera muchos ingresos en las unidades de cuidados intensivos pediátricos (UCIP). Nuevas formas de soporte respiratorio podrían mejorar la asistencia de estos pacientes. Objetivo: Analizar los cambios epidemiológicos y de soporte respiratorio de los niños ingresados en la UCIP. Pacientes y métodos: Estudio observacional y retrospectivo de los pacientes ingresados por bronquiolitis en la UCIP de un hospital terciario durante la época epidémica del virus respiratorios incitial (VRS) entre los años 2005 y 2010. Resultados: Fueron ingresados 229 pacientes; el 83% estaba infectado por VRS. La media de edad fue de 1,48 meses; los menores de 3 meses generaron el mayor número de ingresos (73,3%).Diciembre fue el mes con más número de ingresos (52%). La mortalidad fue del 0,9%. La media de estancia en UCIP y de soporte respiratorio fue de 4 y 3 días (diferencias no significativas entre las diferentes epidemias). Los pacientes con bronquiolitis por VRS eran de menor edad que los VRS negativo (media 2,61 y 4,05 meses; p = 0,023). El 73% de los casos requirieron soporte respiratorio. El porcentaje de pacientes en los que se utilizó soporte respiratorio activo fue en aumentó (Z = 3,81; p = 0,00014), sobre todo a expensas de la oxigenoterapia de alto flujo con cánulas nasales (Z = 3,62; p = 0,00028). Se observó relación inversa entre la edad y los días de estancia en UCIP (beta =−0,245; p ≤ 0,0001) y de soporte respiratorio (beta =−0,167;p = 0,039).Conclusiones: La mayoría de los pacientes ingresados por bronquiolitis en la UCIP tienen menos de 3 meses. La mortalidad es del 0,9%. El soporte respiratorio (sobre todo la ventilación mecánica no invasiva y la oxigenoterapia de alto flujo en cánulas nasales) se utiliza cada vez más frecuentemente. A menor edad, más días de ingreso en UCIP y de soporte respiratorio son necesarios (AU)

Introduction: Bronchiolitis generates lots of admissions during the cold months in the paediatric intensive care units (PICU). New forms of respiratory support are being used and could improve the care of these patients. Objectives: To analyse the epidemiological and respiratory support changes of children admitted to the PICU. Patients and methods: An observational, retrospective, descriptive and analytical study of patients with the diagnosis of bronchiolitis admitted to the PICU of a tertiary hospital during the respiratory syncytial virus (RSV) epidemic months between 2005 and 2010. Results: A total of 229 patients were admitted, of whom 83% were infected with RSV. The mean age was 1.48 months, with children under 3 months being the greatest number of admissions (73.3%). December was the month with the highest number of admissions (52%). Mortality was 0.9%. The mean time of stay in the PICU and on respiratory assistance were 4 and 3 days, respectively (no significant differences between the periods studied). Patients with RSV bronchiolitis were younger than the negative RSV (mean 2.61 months and 4.05 months, P = 0.023).Active respiratory support was required in 73% of cases. The percentage of patients who required active respiratory support increased over the years (Z = 3.81, P = 0.00014), especially high flow nasal oxygen therapy (Z = 3.62, P = 0.00028). An inverse relationship was observed between patient age and length of stay in PICU (Beta =−0.245, P≤0.0001) and days on respiratory support(Beta =−0.167, P = 0.039).Conclusions: Most patients admitted to the PICU are less than 3 months old. Mortality was 0.9%. Respiratory support (especially non-invasive mechanical ventilation and high flow nasal oxygen therapy) is used increasingly often. The youngest patients need more days in PICU and more respiratory support (AU)