Salud y discapacidad en niñas y niños argentinos con cardiopatías congénitas complejas operadas. Resultados a los dos años de vida / Health and disability in Argentine children with complex congenital heart disease undergoing surgery. Outcomes at 2 years of life

Introducción. Las cardiopatías congénitas complejas son las malformaciones más frecuentes con una importante carga de morbimortalidad. Se busca conocer el estado de salud y discapacidad de niños operados en un hospital de tercer nivel. Población y métodos. Fueron evaluados en las áreas de crecimiento, neurodesarrollo y discapacidad 84 pacientes entre 21 y 39 meses de edad operados con circulación extracorpórea durante el primer año de vida. Resultados. La mayoría de los niños crece por debajo del percentil 50 en los tres parámetros, con mayor compromiso en aquellos con síndrome genético asociado. La frecuencia de discapacidad fue del 55 %. En el grupo con CC aislada, la gravedad de la cardiopatía y el examen neurológico patológico al alta se asociaron con discapacidad (p = 0,047 y p = 0,03). Contar solo con cobertura de salud pública se asocia a un menor acceso a intervenciones oportunas (p = 0,02). Conclusiones. Cerca de la mitad de los pacientes evoluciona con discapacidad moderada-grave. Es competencia del equipo de salud conocer las morbilidades más allá del aspecto cardiovascular y los factores de riesgo. Las barreras en el acceso a las intervenciones adecuadas advierten a los profesionales sobre la relevancia de buscar estrategias para vencerlas y lograr el máximo potencial de desarrollo de los pacientes.

Introduction. Complex congenital heart defects are the most frequent malformations and entail a significant burden of disease. The objective of this study was to determine the health status and disability of children who underwent surgery at a tertiary care hospital. Population and methods. A total of 84 patients aged 21 to 39 months who had a surgery with extracorporeal circulation during their first year of life were assessed in terms of growth, neurodevelopment, and disability. Results. In most children, growth was below the 50th percentile in all 3 parameters, and greater involvement was observed in those with an associated genetic disorder. The frequency of disability was 55%. In the group with isolated congenital heart disease, the severity of disease and a pathological neurological examination at discharge were associated with disability (p = 0.047 and p = 0.03). Having only public health coverage was associated with less access to timely interventions (p = 0.02). Conclusions. Nearly half of the patients develop moderate-severe disability. Being aware of morbidities beyond the cardiovascular aspect and risk factors is part of the health care team's scope. Barriers in access to appropriate interventions caution health care providers of the relevance of seeking strategies to overcome them and achieve the maximum development potential of patients.

Health and disability in Argentine children with complex congenital heart disease undergoing surgery. Outcomes at 2 years of life. / Salud y discapacidad en niñas y niños argentinos con cardiopatías congénitas complejas operadas. Resultados a los dos años de vida.

Introduction. Complex congenital heart defects are the most frequent malformations and entail a significant burden of disease. The objective of this study was to determine the health status and disability of children who underwent surgery at a tertiary care hospital. Population and methods. A total of 84 patients aged 21 to 39 months who had a surgery with extracorporeal circulation during their first year of life were assessed in terms of growth, neurodevelopment, and disability. Results. In most children, growth was below the 50 th percentile in all 3 parameters, and greater involvement was observed in those with an associated genetic disorder. The frequency of disability was 55%. In the group with isolated congenital heart disease, the severity of disease and a pathological neurological examination at discharge were associated with disability (p = 0.047 and p = 0.03). Having only public health coverage was associated with less access to timely interventions (p = 0.02). Conclusions. Nearly half of the patients develop moderate-severe disability. Being aware of morbidities beyond the cardiovascular aspect and risk factors is part of the health care team's scope. Barriers in access to appropriate interventions caution health care providers of the relevance of seeking strategies to overcome them and achieve the maximum development potential of patients.

Introducción. Las cardiopatías congénitas complejas son las malformaciones más frecuentes con una importante carga de morbimortalidad. Se busca conocer el estado de salud y discapacidad de niños operados en un hospital de tercer nivel. Población y métodos. Fueron evaluados en las áreas de crecimiento, neurodesarrollo y discapacidad 84 pacientes entre 21 y 39 meses de edad operados con circulación extracorpórea durante el primer año de vida. Resultados. La mayoría de los niños crece por debajo del percentil 50 en los tres parámetros, con mayor compromiso en aquellos con síndrome genético asociado. La frecuencia de discapacidad fue del 55 %. En el grupo con CC aislada, la gravedad de la cardiopatía y el examen neurológico patológico al alta se asociaron con discapacidad (p = 0,047 y p = 0,03). Contar solo con cobertura de salud pública se asocia a un menor acceso a intervenciones oportunas (p = 0,02). Conclusiones. Cerca de la mitad de los pacientes evoluciona con discapacidad moderada-grave. Es competencia del equipo de salud conocer las morbilidades más allá del aspecto cardiovascular y los factores de riesgo. Las barreras en el acceso a las intervenciones adecuadas advierten a los profesionales sobre la relevancia de buscar estrategias para vencerlas y lograr el máximo potencial de desarrollo de los pacientes.

Social representations of premature birth from the perspective of individuals born preterm in the 1990s.

INTRODUCTION: Prematurity is a public health problem that calls to focus on its causes and consequences through a trans disciplinary approach. There are no studies analyzing premature birth from the perspective of individuals born preterm. OBJECTIVE: To identify social representations associated with premature birth of individuals born preterm in the 1990s in Argentina. POPULATION AND METHODS: Twelve focus groups were conducted with individuals born preterm with a birth weight<1500 g assisted at tertiary care facilities between 1990 and 1995. Focus group contents were analyzed based on the social representation theory. RESULTS: Fifty-nine adolescents and youth participated; their median age was 18.5±2.3 years old. Based on the analysis of focus groups, six core themes were developed: life experience, parents' memories and experiences, overprotection body, education, relationship with the medical practice and knowledge. CONCLUSIONS: The methodology used allowed to create a space for mutual recognition and reflection for participants. Prematurity is a significant element, especially in those who suffered major sequelae. Adolescents and youth give a warning on the negative effects caused by overprotective parents and reveal the possibility of redefining the challenges associated with their history of premature birth.

Representaciones sociales de la prematurez desde la perspectiva de personas nacidas prematuras en la década de los noventa / Social representations of premature birth from the perspective of individuals born preterm in the 1990s

Introducción. La prematurez es un problema de salud pública que desafía a enfocar sus causas y consecuencias con un abordaje multidisciplinario. No hay estudios que analicen la prematurez desde la perspectiva de personas que nacieron de parto prematuro. Objetivo. Identificar las representaciones sociales asociadas a la prematurez de personas nacidas de parto prematuro en Argentina en la década de los noventa. Población y métodos. Se realizaron 12 grupos focales, con personas que nacieron prematuramente y con peso < 1500 g, atendidas en centros de tercer nivel entre 1990 y 1995. Los contenidos de los grupos focales se analizaron sobre la base de la teoría de las representaciones sociales. Resultados. Participaron 59 jóvenes y adolescentes, con una mediana de edad de 18,5 ± 2,3 años. A partir del análisis de los grupos focales, se elaboraron 6 núcleos temáticos: trayectoria de vida, recuerdos y vivencias de los padres, sobreprotección, cuerpo, escolaridad, relación con las prácticas y saberes médicos. Conclusiones. La metodología utilizada generó un espacio de mutuo reconocimiento y reflexión para los participantes. La prematurez constituye un elemento significativo, principalmente en aquellos que tuvieron mayores secuelas. Los jóvenes y adolescentes alertan sobre los efectos negativos de la sobreprotección de los padres, así como dan cuenta de la posibilidad de resignificar las dificultades de su historia de prematurez.(AU)

Introduction.Prematurity is a public health problem that calls to focus on its causes and consequences through a trans disciplinary approach. There are no studies analyzing premature birth from the perspective of individuals born preterm. Objective.To identify social representations associated with premature birth of individuals born preterm in the 1990s in Argentina. Population and Methods.Twelve focus groups were conducted with individuals born preterm with a birth weight <1500 g assisted at tertiary care facilities between 1990 and 1995. Focus group contents were analyzed based on the social representation theory. Results.Fifty-nine adolescents and youth participated; their median age was 18.5 ± 2.3 years old. Based on the analysis of focus groups, six core themes were developed: life experience, parents memories and experiences, overprotection body, education, relationship with the medical practice and knowledge. Conclusions.The methodology used allowed to create a space for mutual recognition and reflection for participants. Prematurity is a significant element, especially in those who suffered major sequelae. Adolescents and youth give a warning on the negative effects caused by overprotective parents and reveal the possibility of redefining the challenges associated with their history of premature birth.(AU)

Representaciones sociales de la prematurez desde la perspectiva de personas nacidas prematuras en la década de los noventa / Social representations of premature birth from the perspective of individuals born preterm in the 1990s

Introducción. La prematurez es un problema de salud pública que desafía a enfocar sus causas y consecuencias con un abordaje multidisciplinario. No hay estudios que analicen la prematurez desde la perspectiva de personas que nacieron de parto prematuro. Objetivo. Identificar las representaciones sociales asociadas a la prematurez de personas nacidas de parto prematuro en Argentina en la década de los noventa. Población y métodos. Se realizaron 12 grupos focales, con personas que nacieron prematuramente y con peso < 1500 g, atendidas en centros de tercer nivel entre 1990 y 1995. Los contenidos de los grupos focales se analizaron sobre la base de la teoría de las representaciones sociales. Resultados. Participaron 59 jóvenes y adolescentes, con una mediana de edad de 18,5 ± 2,3 años. A partir del análisis de los grupos focales, se elaboraron 6 núcleos temáticos: trayectoria de vida, recuerdos y vivencias de los padres, sobreprotección, cuerpo, escolaridad, relación con las prácticas y saberes médicos. Conclusiones. La metodología utilizada generó un espacio de mutuo reconocimiento y reflexión para los participantes. La prematurez constituye un elemento significativo, principalmente en aquellos que tuvieron mayores secuelas. Los jóvenes y adolescentes alertan sobre los efectos negativos de la sobreprotección de los padres, así como dan cuenta de la posibilidad de resignificar las dificultades de su historia de prematurez.(AU)

Introduction.Prematurity is a public health problem that calls to focus on its causes and consequences through a trans disciplinary approach. There are no studies analyzing premature birth from the perspective of individuals born preterm. Objective.To identify social representations associated with premature birth of individuals born preterm in the 1990s in Argentina. Population and Methods.Twelve focus groups were conducted with individuals born preterm with a birth weight <1500 g assisted at tertiary care facilities between 1990 and 1995. Focus group contents were analyzed based on the social representation theory. Results.Fifty-nine adolescents and youth participated; their median age was 18.5 ± 2.3 years old. Based on the analysis of focus groups, six core themes were developed: life experience, parents memories and experiences, overprotection body, education, relationship with the medical practice and knowledge. Conclusions.The methodology used allowed to create a space for mutual recognition and reflection for participants. Prematurity is a significant element, especially in those who suffered major sequelae. Adolescents and youth give a warning on the negative effects caused by overprotective parents and reveal the possibility of redefining the challenges associated with their history of premature birth.(AU)

Representaciones sociales de la prematurez desde la perspectiva de personas nacidas prematuras en la década de los noventa / Social representations of premature birth from the perspective of individuals born preterm in the 1990s

Introducción. La prematurez es un problema de salud pública que desafía a enfocar sus causas y consecuencias con un abordaje multidisciplinario. No hay estudios que analicen la prematurez desde la perspectiva de personas que nacieron de parto prematuro. Objetivo. Identificar las representaciones sociales asociadas a la prematurez de personas nacidas de parto prematuro en Argentina en la década de los noventa. Población y métodos. Se realizaron 12 grupos focales, con personas que nacieron prematuramente y con peso < 1500 g, atendidas en centros de tercer nivel entre 1990 y 1995. Los contenidos de los grupos focales se analizaron sobre la base de la teoría de las representaciones sociales. Resultados. Participaron 59 jóvenes y adolescentes, con una mediana de edad de 18,5 ± 2,3 años. A partir del análisis de los grupos focales, se elaboraron 6 núcleos temáticos: trayectoria de vida, recuerdos y vivencias de los padres, sobreprotección, cuerpo, escolaridad, relación con las prácticas y saberes médicos. Conclusiones. La metodología utilizada generó un espacio de mutuo reconocimiento y reflexión para los participantes. La prematurez constituye un elemento significativo, principalmente en aquellos que tuvieron mayores secuelas. Los jóvenes y adolescentes alertan sobre los efectos negativos de la sobreprotección de los padres, así como dan cuenta de la posibilidad de resignificar las dificultades de su historia de prematurez.

Introduction.Prematurity is a public health problem that calls to focus on its causes and consequences through a trans disciplinary approach. There are no studies analyzing premature birth from the perspective of individuals born preterm. Objective.To identify social representations associated with premature birth of individuals born preterm in the 1990s in Argentina. Population and Methods.Twelve focus groups were conducted with individuals born preterm with a birth weight <1500 g assisted at tertiary care facilities between 1990 and 1995. Focus group contents were analyzed based on the social representation theory. Results.Fifty-nine adolescents and youth participated; their median age was 18.5 ± 2.3 years old. Based on the analysis of focus groups, six core themes were developed: life experience, parents' memories and experiences, overprotection body, education, relationship with the medical practice and knowledge. Conclusions.The methodology used allowed to create a space for mutual recognition and reflection for participants. Prematurity is a significant element, especially in those who suffered major sequelae. Adolescents and youth give a warning on the negative effects caused by overprotective parents and reveal the possibility of redefining the challenges associated with their history of premature birth.

Social representations of premature birth from the perspective of individuals born preterm in the 1990s. / Social representations of premature birth from the perspective of individuals born preterm in the 1990s.

INTRODUCTION: Prematurity is a public health problem that calls to focus on its causes and consequences through a trans disciplinary approach. There are no studies analyzing premature birth from the perspective of individuals born preterm. OBJECTIVE: To identify social representations associated with premature birth of individuals born preterm in the 1990s in Argentina. POPULATION AND METHODS: Twelve focus groups were conducted with individuals born preterm with a birth weight<1500 g assisted at tertiary care facilities between 1990 and 1995. Focus group contents were analyzed based on the social representation theory. RESULTS: Fifty-nine adolescents and youth participated; their median age was 18.5±2.3 years old. Based on the analysis of focus groups, six core themes were developed: life experience, parents memories and experiences, overprotection body, education, relationship with the medical practice and knowledge. CONCLUSIONS: The methodology used allowed to create a space for mutual recognition and reflection for participants. Prematurity is a significant element, especially in those who suffered major sequelae. Adolescents and youth give a warning on the negative effects caused by overprotective parents and reveal the possibility of redefining the challenges associated with their history of premature birth.

Series de Pediatría Garrahan. El niño que fue prematuro

A 27 años del nacimiento del Hospital Garrahan, sentimos la necesidad de ponernos en contacto con todos los pediatras para compartir con ellos las estrategias de atención del niño y su familia utilizadas en nuestra institución, destacar la importancia del trabajo interdisciplinario y colaboración permanente. En este volumen desarrollamos el tema del niño que fue prematuro, ya que estos pacientes presentan al pediatra desafíos específicos y novedosos. Si bien la prematurez es la principal causa de mortalidad infantil, la sobrevida de los prematuros ha aumentado significativamente en los últimos años, y por lo tanto estos niños acceden al cuidado pediátrico con creciente frecuencia y vulnerabilidad. Algunos de ellos pueden sufrir secuelas de distinto grado y en diferentes aspectos de su desarrollo, crecimiento o función respiratoria. Dado que el rol del pediatra es fundamental en el diagnóstico, la prevención y el tratamiento de posibles secuelas, el reconocimiento de sus necesidades especiales y cuidado centrado en la familia, el profesional encontrará aquí aspectos epidemiológicos, de identificación y prevención de riesgos, comunicación con la familia, oportunidades de interconsultas y abordaje de la discapacidad mediante el análisis de casos clínicos.

The Argentina Premature Asthma and Respiratory Team (APART): objectives, design, and recruitment results of a prospective cohort study of viruses and wheezing in very low birth weight infants.

BACKGROUND: Asthma and wheezing account for a substantial disease burden around the world. Very low birth weight (VLBW, <1500 grams) infants are at an increased risk for the development of severe acute respiratory illness (ARI) and recurrent wheeze/asthma. The role of respiratory viruses in asthma predisposition in premature infants is not well understood. Preliminary evidence suggests that infection with human rhinovirus (RV) early in life may contribute to greater burden of asthma later in life. METHODS: A prospective cohort study of premature VLBW infants from Buenos Aires, Argentina, was enrolled year-round during a three-year period in the neonatal intensive care unit and followed during every ARI and with monthly well visits during the first year of life. Longitudinal follow-up up until age five years is ongoing. RESULTS: This report describes the objectives, design, and recruitment results of this prospective cohort. Two hundred and five patients were enrolled from August 2011 through January 2014, and follow-up is ongoing. A total of 319 ARI episodes were observed from August 2011 to July 2014, and 910 well visits occurred during this time period. CONCLUSIONS: The Argentina Premature Asthma and Respiratory Team (APART) is a unique cohort consisting of over 200 patients and over 1200 specimens who have been and will continue to be followed intensively from NICU discharge to capture baseline risk factors and every ARI, with interceding well visits during the first year of life, as well as longitudinal follow-up to age 5 years for asthma and atopy outcomes.

Hospitalization due to respiratory syncytial virus infection in patients under 2 years of age with hemodynamically significant congenital heart disease.

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.

Internação devido a infecção pelo vírus sincicial respiratório em pacientes menores de 2 anos com doença cardíaca congênita hemodinamicamente significativa / Hospitalization due to respiratory syncytial virus infection in patients under 2 years of age with hemodynamically significant congenital heart disease

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.