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Introducción. Las funciones del Comité de Ética Clínica (CEC) son educativas, normativas, consultivas, mediadoras y reflexivas. Como cualquier servicio de salud, las consultas de casos a un CEC deben ser sujetas a revisión y mejora de la calidad. Los objetivos fueron evaluar la factibilidad, la efectividad y la satisfacción de las recomendaciones ético-asistenciales dadas por el CEC, y evaluar su impacto en el equipo tratante y en la familia. Población y métodos. Estudio descriptivo, retrospectivo, cualicuantitativo, de casos clínicos presentados en el Comité de Ética Clínica del hospital desde el 1 de enero de 2013 hasta el 31 de diciembre de 2017, según datos del libro de actas, historias clínicas, registros de la Oficina de Comunicación a Distancia y entrevistas semiestructuradas al equipo de salud. Resultados. Se analizaron 108 casos (106 pacientes), 73 casos con encuesta y registros, y 35 solamente con registros. Los motivos principales más frecuentes de consulta fueron los siguientes: adecuación del esfuerzo terapéutico (46/42,6 %), compromiso neurológico grave (15/13,9 %), calidad de vida del paciente (11/10,2 %), conflictos entre el paciente, la familia y el sistema de salud (7/6,5 %), y rechazo del tratamiento por la familia (6/5,6 %). Se hallaron niveles altos de satisfacción (> 95 %) y niveles moderados de factibilidad (> 74 %) y efectividad (> 85 %). Solo en 50/108 casos (46,3 %) quedó registro en la historia clínica de la consulta al CEC y el 44 % de los profesionales opinó que la consulta tuvo un impacto positivo en la familia y en el paciente. Conclusiones. Los resultados contribuyeron a descubrir oportunidades de mejora, especialmente en la documentación y en la comunicación en el proceso de consulta.

Introduction. A clinical ethics committee (CEC) has educational, regulatory, advisory, mediation, and reflexive functions. As any health care service, the consults with the CEC should be subjected to review and quality improvement. The study objectives were to assess the feasibility, effectiveness, and satisfaction with the bioethical recommendations made by the CEC and assess their impact on the treating team and the patient's family. Population and methods. Descriptive, retrospective, qualitative, and quantitative study of clinical cases submitted to the hospital's CEC between January 1 st, 2013 and December 31, 2017 using data from the CEC minute book, medical records, registries from the Office for Remote Communication, and semi-structured interviews with health care team members. Results. A total of 108 cases (106 patients) were analyzed: 73 cases with survey and registries and 35 with registries only. The main most frequent reasons for consultation were adequacy of therapeutic effort (46/42.6%), severe neurological involvement (15/13.9%), patient's quality of life (11/10.2%), patient-family-health system conflict (7/6.5%), and family's refusal of treatment (6/5.6%). High levels of satisfaction (> 95%) and moderate levels of feasibility (> 74%) and effectiveness (> 85%) were observed. In only 50/108 cases (46.3%), the consultation with the CEC was registered in the medical record, 44% of health care providers stated that the consultation had a positive impact on the patient and their family. Conclusions. Results helped to establish improvement opportunities, especially in terms of documentation and communication in the consultation process.

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INTRODUCTION: A clinical ethics committee (CEC) has educational, regulatory, advisory, mediation, and reflexive functions. As any health care service, the consults with the CEC should be subjected to review and quality improvement. The study objectives were to assess the feasibility, effectiveness, and satisfaction with the bioethical recommendations made by the CEC and assess their impact on the treating team and the patient's family. POPULATION AND METHODS: Descriptive, retrospective, qualitative, and quantitative study of clinical cases submitted to the hospital's CEC between January 1st, 2013 and December 31st, 2017 using data from the CEC minute book, medical records, registries from the Office for Remote Communication, and semi-structured interviews with health care team members. RESULTS: A total of 108 cases (106 patients) were analyzed: 73 cases with survey and registries and 35 with registries only. The main most frequent reasons for consultation were adequacy of therapeutic effort (46/42.6%), severe neurological involvement (15/13.9%), patient's quality of life (11/10.2%), patient-family-health system conflict (7/6.5%), and family's refusal of treatment (6/5.6%). High levels of satisfaction (> 95%) and moderate levels of feasibility (> 74%) and effectiveness (> 85%) were observed. In only 50/108 cases (46.3%), the consultation with the CEC was registered in the medical record, 44% of health care providers stated that the consultation had a positive impact on the patient and their family. CONCLUSIONS: Results helped to establish improvement opportunities, especially in terms of documentation and communication in the consultation process.

Introducción. Las funciones del Comité de Ética Clínica (CEC) son educativas, normativas, consultivas, mediadoras y reflexivas. Como cualquier servicio de salud, las consultas de casos a un CEC deben ser sujetas a revisión y mejora de la calidad. Los objetivos fueron evaluar la factibilidad, la efectividad y la satisfacción de las recomendaciones ético-asistenciales dadas por el CEC, y evaluar su impacto en el equipo tratante y en la familia. Población y métodos. Estudio descriptivo, retrospectivo, cualicuantitativo, de casos clínicos presentados en el Comité de Ética Clínica del hospital desde el 1 de enero de 2013 hasta el 31 de diciembre de 2017, según datos del libro de actas, historias clínicas, registros de la Oficina de Comunicación a Distancia y entrevistas semiestructuradas al equipo de salud. Resultados. Se analizaron 108 casos (106 pacientes), 73 casos con encuesta y registros, y 35 solamente con registros. Los motivos principales más frecuentes de consulta fueron los siguientes: adecuación del esfuerzo terapéutico (46/42,6 %), compromiso neurológico grave (15/13,9 %), calidad de vida del paciente (11/10,2 %), conflictos entre el paciente, la familia y el sistema de salud (7/6,5 %), y rechazo del tratamiento por la familia (6/5,6 %). Se hallaron niveles altos de satisfacción (> 95 %) y niveles moderados de factibilidad (> 74 %) y efectividad (> 85 %). Solo en 50/108 casos (46,3 %) quedó registro en la historia clínica de la consulta al CEC y el 44 % de los profesionales opinó que la consulta tuvo un impacto positivo en la familia y en el paciente. Conclusiones. Los resultados contribuyeron a descubrir oportunidades de mejora, especialmente en la documentación y en la comunicación en el proceso de consulta.

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Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospital's Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committee's career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.

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Desde los años 60, ha habido un interés creciente por la complejidad de los problemas éticos que plantea la práctica de la medicina. Desde entonces, numerosas teorías éticas han intentado fundamentar la bioética justificando las consideraciones que han sido necesarias para la toma de decisiones. El objetivo del artículo es exponer brevemente la historia y el funcionamiento del Comité de Ética de un hospital pediátrico, así como la evolución experimentada desde sus comienzos. A lo largo de la trayectoria como Comité de Ética, se fueron realizando progresivos cambios en la forma de trabajo. En los primeros años, se exigía el cumplimiento de una serie de formalidades en la presentación de los pacientes, pero esto se fue modificando con el tiempo hasta llegar a una presentación menos rígida y más reflexiva y plural. En el caso de nuestro Comité Hospitalario de Ética, la deliberación es la herramienta principal y más valorada de su actividad en la búsqueda de la mejor opción para la asistencia de los casos problemáticos que se plantean.

Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospital's Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committee's career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.

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Desde los años 60, ha habido un interés creciente por la complejidad de los problemas éticos que plantea la práctica de la medicina. Desde entonces, numerosas teorías éticas han intentado fundamentar la bioética justificando las consideraciones que han sido necesarias para la toma de decisiones. El objetivo del artículo es exponer brevemente la historia y el funcionamiento del Comité de Etica de un hospital pediátrico, así como la evolución experimentada desde sus comienzos. A lo largo de la trayectoria como Comité de Etica, se fueron realizando progresivos cambios en la forma de trabajo. En los primeros años, se exigía el cumplimiento de una serie de formalidades en la presentación de los pacientes, pero esto se fue modificando con el tiempo hasta llegar a una presentación menos rígida y más reflexiva y plural. En el caso de nuestro Comité Hospitalario de Etica, la deliberación es la herramienta principal y más valorada de su actividad en la búsqueda de la mejor opción para la asistencia de los casos problemáticos que se plantean.(AU)

Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospitals Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committees career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.(AU)

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Desde los años 60, ha habido un interés creciente por la complejidad de los problemas éticos que plantea la práctica de la medicina. Desde entonces, numerosas teorías éticas han intentado fundamentar la bioética justificando las consideraciones que han sido necesarias para la toma de decisiones. El objetivo del artículo es exponer brevemente la historia y el funcionamiento del Comité de Etica de un hospital pediátrico, así como la evolución experimentada desde sus comienzos. A lo largo de la trayectoria como Comité de Etica, se fueron realizando progresivos cambios en la forma de trabajo. En los primeros años, se exigía el cumplimiento de una serie de formalidades en la presentación de los pacientes, pero esto se fue modificando con el tiempo hasta llegar a una presentación menos rígida y más reflexiva y plural. En el caso de nuestro Comité Hospitalario de Etica, la deliberación es la herramienta principal y más valorada de su actividad en la búsqueda de la mejor opción para la asistencia de los casos problemáticos que se plantean.(AU)

Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospitals Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committees career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.(AU)

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Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospitals Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committees career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.

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OBJECTIVE: To describe hospitalization rates, burden of disease, and associated risk factors of acute respiratory infections (ARI), particularly those caused by respiratory syncytial virus (RSV) and non-RSV-ARI, in a cohort of patients under 2 years of age with congenital heart disease (CHD). METHODS: A prospective, observational cohort study was conducted with CHD patients discharged from the neonatal unit and followed up at a referral center. Demographic variables, type of CHD, and medical needs were recorded. Study primary outcome was hospitalization for ARI (overall, due to RSV, and due to other causes). Secondary outcome was burden of disease in hospitalized patients. Incidence rates of hospitalization were calculated for overall ARI and RSV-ARI. Incidence densities were additionally calculated. RESULTS: Seventy-one patients with birth weight 3,043 ± 720 g (mean ± SD) were included; 74% required surgery and 8.4% died of CHD during the study. Overall, 22/71 patients were hospitalized due to ARI (31%; 95%CI 20-43), 15 of them RSV-associated (21%; 95%CI 12-32), and there were 1.35 episodes of hospitalization for ARI/1,000 days of follow-up (0.92 episodes of hospitalization for RSV-ARI/1,000 days). Forty per cent of patients with ARI due to RSV needed admission to pediatric ICU and 30% required mechanical ventilation vs. none in non-RSV-ARI. CONCLUSIONS: In the studied population, ARI hospitalization was common, and RSV was its most frequent cause. Disease burden associated with RSV-ARI was considerable, although no patient died from ARI. Except younger age, no other biological or social risk factors were found associated with RSV-ARI hospitalization.

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OBJETIVO: Descrever taxas de hospitalização, carga de doença e fatores de risco associados a infecções agudas respiratórias (IRAs), especialmente aquelas causadas pelo vírus sincicial respiratório (VSR) e as causadas por outros vírus, em uma coorte de pacientes menores de 2 anos com doença cardíaca congênita (DCC). MÉTODOS: Um estudo de coorte observacional e prospectivo foi realizado com pacientes com DCC que receberam alta da unidade neonatal e foram acompanhados em um centro de referência. Foram registradas variáveis demográficas, tipo de DCC e necessidades médicas. O desfecho primário foi a internação por IRA (em valores totais e referentes apenas à infecção pelo VSR e por outras causas), e o secundário a carga da doença em pacientes hospitalizados. As taxas de internação foram calculadas considerando os valores totais de IRA e também os referentes apenas à IRA pelo VSR. Também foi calculada a densidade de incidência. RESULTADOS: Foram incluídos 71 pacientes com peso de nascimento de 3.043±720 g (média ± DP); 74% necessitaram de cirurgia e 8,4% faleceram em decorrência da DCC. No total, 22/71 pacientes foram hospitalizados por IRA (31%; IC95% 20-43), 15 deles pelo VSR (21%; IC95% 12-32), e ocorreram 1,35 episódios de internação por IRA/1.000 dias de seguimento (0,92 episódios de internação por IRA causada pelo VRS/1.000 dias). Quarenta por cento dos pacientes com IRA causada pelo VSR necessitaram de admissão em UTI pediátrica, e 30% necessitaram de VM versus nenhum nos casos de IRA por outros vírus. CONCLUSÕES: Na população estudada, a internação por IRA era comum, sendo o VSR a causa mais frequente. A carga da doença associada à IRA pelo VSR foi considerável, embora nenhum paciente tivesse falecido em decorrência da IRA. Com exceção da pouca idade, nenhum outro fator de risco biológico ou social esteve associado à internação por IRA causada pelo VSR.

OBJECTIVE: To describe hospitalization rates, burden of disease, and associated risk factors of acute respiratory infections (ARI), particularly those caused by respiratory syncytial virus (RSV) and non-RSV-ARI, in a cohort of patients under 2 years of age with congenital heart disease (CHD). METHODS: A prospective, observational cohort study was conducted with CHD patients discharged from the neonatal unit and followed up at a referral center. Demographic variables, type of CHD, and medical needs were recorded. Study primary outcome was hospitalization for ARI (overall, due to RSV, and due to other causes). Secondary outcome was burden of disease in hospitalized patients. Incidence rates of hospitalization were calculated for overall ARI and RSV-ARI. Incidence densities were additionally calculated. RESULTS: Seventy-one patients with birth weight 3,043±720 g (mean ± SD) were included; 74% required surgery and 8.4% died of CHD during the study. Overall, 22/71 patients were hospitalized due to ARI (31%; 95%CI 20-43), 15 of them RSV-associated (21%; 95% CI 12-32), and there were 1.35 episodes of hospitalization for ARI/1,000 days of follow-up (0.92 episodes of hospitalization for RSV-ARI/1,000 days). Forty per cent of patients with ARI due to RSV needed admission to pediatric ICU and 30% required mechanical ventilation vs. none in non-RSV-ARI. CONCLUSIONS: In the studied population, ARI hospitalization was common, and RSV was its most frequent cause. Disease burden associated with RSV-ARI was considerable, although no patient died from ARI. Except younger age, no other biological or social risk factors were found associated with RSV-ARI hospitalization.

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INTRODUCCION: Los recién nacidos de muy bajo peso al nacer presentan necesidades especiales de vigilancia y tratamiento después del alta de la unidad de cuidados intensivos neonatales. El ingreso de estos niños a Programas de Seguimiento Ambulatorio de Recién Nacidos de Alto Riesgo (PSAR) constituye una necesidad imperativa, ya que en Argentina estos casos representan un tercio de la mortalidad infantil. Estos programas integran la asistencia de alta complejidad a la atención ambulatoria primaria, estableciendo estrategias de prevención activas.OBJETIVO: Establecer un diagnóstico situacional respecto a la disponibilidad, características estructurales y de funcionamiento de los PSAR en maternidades públicas de la provincia de Buenos Aires con más de 3.000 partos anuales.METODOS: Se realizó un estudio transversal prospectivo de diagnóstico en terreno para evaluar los servicios de salud. La población accesible fueron 21 maternidades; en las que se efectuaron dos encuestas personalizadas en los lugares de trabajo a los jefes de servicio y a los responsables del PSAR, que incluyeron preguntas sobre estructura física, recursos humanos, organización, funcionamiento y registros.RESULTADOS: Cuatro centros no poseen PSAR por carencias de recursos humanos, edilicias y de interconsultores pediátricos. Los restantes 17 centros cuentan con PSAR, aunque con dificultades en recursos humanos (enfermería y equipos interdisciplinarios pediátricos), un escaso registro de datos y deserción, y métodos de diagnóstico y tratamiento no sostenidos en el tiempo.CONCLUSIONES: Son pocos los centros que cumplen con el mínimo estándar de los PSAR, es decir, que proporcionan funciones de asistencia, auditoría, docencia e investigación. Es necesario implementar políticas sanitarias de prevención, detección precoz y tratamiento de trastornos asociados con prematurez, además de optimizar recursos zonales mediante la creación de redes de atención.

INTRODUCTION: Infants with very low weight birth have special needs for monitoring and treatment after discharge from the neonatal intensive care unit. These children must be included in newborn high risk follow-up programs (NHRFPs) in Argentina, because they represent one third of infant mortality. The programs integrate highlt ocmplex assistance to primary patient care, establishing active prevention strategies.OBJECTIVE: To establish a situational analysis regarding availability, structural and operational characteristics of NHRFPs belonging to public maternity hospitals in the province of Buenos Aires with over 3.000 deliveries per year.METHODS: A cross-sectional, prospective, diagnostic study was conducted to evaluate health services. The accessible population consisted of 21 maternity units; two surveys for department and program heads were performed, including questions about physical infrastructure, human resources, organization, operation and records.RESULTS: Four centers do not have NHRFPs due to lack of human resources, facilities or pediatric consultants. The remaining 17 centers have NHRFPs, but also difficulties in human resources (pediatric nursing and interdisciplinary teams), poor record of data and dropout, and the methods of diagnosis and treatment are not sustained over times.CONCLUSIONS: There are few centers that meet the minumum standard of a NHRFP, that is, that provide support, auditing, teaching and research. It is necessary to implement health policies for prevention, early detection and treatment of disorders associated with prematurity, as well as local resource optimization by creating networks of care.

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INTRODUCCION: Los recién nacidos de muy bajo peso al nacer presentan necesidades especiales de vigilancia y tratamiento después del alta de la unidad de cuidados intensivos neonatales. El ingreso de estos niños a Programas de Seguimiento Ambulatorio de Recién Nacidos de Alto Riesgo (PSAR) constituye una necesidad imperativa, ya que en Argentina estos casos representan un tercio de la mortalidad infantil. Estos programas integran la asistencia de alta complejidad a la atención ambulatoria primaria, estableciendo estrategias de prevención activas.OBJETIVO: Establecer un diagnóstico situacional respecto a la disponibilidad, características estructurales y de funcionamiento de los PSAR en maternidades públicas de la provincia de Buenos Aires con más de 3.000 partos anuales.METODOS: Se realizó un estudio transversal prospectivo de diagnóstico en terreno para evaluar los servicios de salud. La población accesible fueron 21 maternidades; en las que se efectuaron dos encuestas personalizadas en los lugares de trabajo a los jefes de servicio y a los responsables del PSAR, que incluyeron preguntas sobre estructura física, recursos humanos, organización, funcionamiento y registros.RESULTADOS: Cuatro centros no poseen PSAR por carencias de recursos humanos, edilicias y de interconsultores pediátricos. Los restantes 17 centros cuentan con PSAR, aunque con dificultades en recursos humanos (enfermería y equipos interdisciplinarios pediátricos), un escaso registro de datos y deserción, y métodos de diagnóstico y tratamiento no sostenidos en el tiempo.CONCLUSIONES: Son pocos los centros que cumplen con el mínimo estándar de los PSAR, es decir, que proporcionan funciones de asistencia, auditoría, docencia e investigación. Es necesario implementar políticas sanitarias de prevención, detección precoz y tratamiento de trastornos asociados con prematurez, además de optimizar recursos zonales mediante la creación de redes de atención.

INTRODUCTION: Infants with very low weight birth have special needs for monitoring and treatment after discharge from the neonatal intensive care unit. These children must be included in newborn high risk follow-up programs (NHRFPs) in Argentina, because they represent one third of infant mortality. The programs integrate highlt ocmplex assistance to primary patient care, establishing active prevention strategies.OBJECTIVE: To establish a situational analysis regarding availability, structural and operational characteristics of NHRFPs belonging to public maternity hospitals in the province of Buenos Aires with over 3.000 deliveries per year.METHODS: A cross-sectional, prospective, diagnostic study was conducted to evaluate health services. The accessible population consisted of 21 maternity units; two surveys for department and program heads were performed, including questions about physical infrastructure, human resources, organization, operation and records.RESULTS: Four centers do not have NHRFPs due to lack of human resources, facilities or pediatric consultants. The remaining 17 centers have NHRFPs, but also difficulties in human resources (pediatric nursing and interdisciplinary teams), poor record of data and dropout, and the methods of diagnosis and treatment are not sustained over times.CONCLUSIONS: There are few centers that meet the minumum standard of a NHRFP, that is, that provide support, auditing, teaching and research. It is necessary to implement health policies for prevention, early detection and treatment of disorders associated with prematurity, as well as local resource optimization by creating networks of care.

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INTRODUCTION: Respiratory syncytial virus is a major cause of bronchiolitis during the first year of life. Preterm infants and patients with bronchopulmonary dysplasia (BPD) have a higher risk of hospitalization. The objective of this study was to assess the risk of hospitalization and to evaluate the cost effectiveness of palivizumab use in our at risk population. METHODS: The study design was based on the hypothetical use of palivizumab in a cohort of patients. The cost effectiveness analysis included costs of palivizumab, the drug prescription and hospitalization. The effectiveness measure was the hospitalization rate decrease according to the result of the IMpact study: a 55% reduction in the need for hospitalization attributable to RSV. The years 1998 and 1999 were analyzed. Evaluable patients had follow-up at the High Risk Clinic and fulfilled the American Academy of Pediatrics criteria for palivizumab prophylaxis. RESULTS: Forty-two patients, 24 with BPD and 18 preterm infants without BPD, were evaluated. Ten patients required hospitalization because of respiratory syncytial virus; one of them died. Hospitalization cost was $184,777. The total palivizumab administration cost would have been $185,064. With a 55% decrease of hospitalization rate, the cost per hospitalization averted would have been $15,358, and the number needed to treat would have been 7.9. A sensitivity analysis showed that the cost per hospitalization averted could range between $2,171 and $48,630 according to the hospitalization rate. CONCLUSIONS: Because new effective but expensive treatments like palivizumab are available, this cost effective analysis can be an important tool in decisions about resource distribution.

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