Desarrollo de los cuidados paliativos pediátricos en Uruguay, 2008-2020: informe de avances / Development of pediatric palliative care in Uruguay, 2008-2020: progress report / Desenvolvimento dos cuidados paliativos pediátricos no Uruguai nos anos 2008-2020: relatório de progresso

Desde el año 2007 en Uruguay los cuidados paliativos (CP) son parte de las prestaciones de salud que todos los ciudadanos que los necesitan tienen derecho a recibir y, desde entonces, ha aumentado significativamente la accesibilidad a estos. Objetivo: describir la situación actual del desarrollo organizativo de servicios de cuidados paliativos pediátricos (CPP) en el país y los pacientes por ellos asistidos desde el inicio de sus actividades hasta el 31/12/2020, las principales fortalezas y desafíos percibidos por los profesionales de dichos equipos. Metodología: se realizó una consulta mediante encuesta online auto administrada enviada a los coordinadores de servicios de CPP del Uruguay. Resultados: se confirmaron 19 equipos en 9/19 departamentos, 5/19 están integrados por profesionales de las cuatro disciplinas básicas recomendadas, el resto por distintas combinaciones de disciplinas, con cargas horarias muy variables. Brindan asistencia en: hospitalización 19/19, policlínica 18/19, atención domiciliaria coordinada 13/19 y retén telefónico 10/19. Fueron asistidos 2957 niños, 23% de los mismos fallecieron. 16/19 equipos reportan como principales fortalezas los valores compartidos y el trabajo en equipo interdisciplinario y 15/19 como principal desafío los déficits de recursos humanos. Conclusiones: persisten importantes inequidades en el acceso a los CPP. Se constató gran variabilidad en la integración de los equipos y la carga horaria de los profesionales. Es necesario que las autoridades sanitarias continúen promoviendo y exigiendo el desarrollo de equipos de CPP en las instituciones y departamentos que no los tienen y el cumplimiento de estándares mínimos de calidad en los ya existentes.

Since 2007, palliative care (PC) has been a part of the health benefits that all Uruguayan citizens are entitled to receive and, since then, accessibility has increased significantly. Objective: to describe the present development of pediatric palliative care services (PPC) in Uruguay and the patients assisted by health providers since the beginning of their services until 12/31/2020 and the key strengths and challenges perceived by these palliative care teams. Methodology: a consultation was carried out through a self-administered online survey and sent to the PPC service coordinators in Uruguay. Results: 19 teams were confirmed in 9/19 departments, 5/19 are integrated by professionals from the four recommended basic disciplines, the rest by different combinations of disciplines, with highly variable workloads. They provide assistance in: hospitalization 19/19, clinics 18/19, coordinated home care 13/19 and telephone assistance 10/19. 2957 children were assisted, 23% of them died. 16/19 teams report shared values and interdisciplinary teamwork as their main strengths, and 15/19 report human resource shortage as their main challenge. Conclusions: significant inequality persist regarding access to PPCs. We confirmed a high variability in teams' integration and professional workload. It is necessary for the health authorities to continue to promote and demand the development of PPC teams in the institutions and departments that do not yet have them and the compliance with minimum quality standards in those that already operate.

Desde 2007, os cuidados paliativos (CP) fazem parte dos benefícios de saúde que todos os cidadãos têm direito a receber no Uruguai e, desde então, a acessibilidade a eles tem aumentado significativamente. Objetivo: descrever a situação atual do desenvolvimento organizacional dos serviços de cuidados paliativos pediátricos (CPP) no Uruguai e dos pacientes atendidos desde o início de suas atividades até 31/12/2020 e as principais fortalezas e desafios percebidos pelos profissionais das referidas equipes. Metodologia: foi realizada uma consulta por meio de uma pesquisa online autoaplicável enviada aos coordenadores dos serviços do CPP no Uruguai. Resultados: 19 equipes foram confirmadas em 19/09 departamentos, 19/05 compostas por profissionais das quatro disciplinas básicas recomendadas, o restante por diferentes combinações de disciplinas, com cargas horárias altamente variáveis. Elas atendem em: internação 19/19, policlínica 18/19, atendimento domiciliar coordenado 13/19 e posto telefônico 19/10. 2.957 crianças foram atendidas, 23% delas faleceram. 16/19 equipes relatam valores compartilhados e trabalho em equipe interdisciplinar como suas principais fortalezas, e 15/19 relatam déficits de recursos humanos como seu principal desafio. Conclusões: persistem desigualdades significativas no acesso aos CPP. Verificou-se: grande variabilidade na integração das equipes e na carga de trabalho dos profissionais. É necessário que as autoridades de saúde continuem promovendo e exigindo o desenvolvimento de equipes de CPP nas instituições e departamentos que não as possuem e o cumprimento de padrões mínimos de qualidade nas que já existem.

Complexity of pediatric chronic disease: cross-sectional study with 16,237 patients followed by multiple medical specialties / Complexidade da doença crônica pediátrica: estudo tranversal com 16.237 pacientes seguidos por múltiplas especialidades médicas

ABSTRACT Objective: To assess demographic data and characteristics of children and adolescents with pediatric chronic diseases (PCD), according to the number of specialties/patient. Methods: We performed a cross-sectional study with 16,237 PCD patients at outpatient clinics in one year. Data were analyzed by an electronic data system, according to the number of physician appointments for PCD. This study assessed: demographic data, follow-up characteristics, types of medical specialty, diagnosis (International Statistical Classification of Diseases and Related Health Problems - ICD-10), number of day hospital clinic visits, and acute complications. Results: Patients followed by ≥3 specialties simultaneously showed a significantly higher duration of follow-up compared to those followed by ≤2 specialties [2.1 (0.4-16.4) vs. 1.4 (0.1-16.2) years; p<0.001] and a higher number of appointments in all specialties. The most prevalent medical areas in patients followed by ≥3 specialties were: Psychiatry (Odds Ratio - OR=8.0; confidence interval of 95% - 95%CI 6-10.7; p<0.001), Palliative/Pain Care (OR=7.4; 95%CI 5.7-9.7; p<0.001), Infectious Disease (OR=7.0; 95%CI 6.4-7.8; p<0.001) and Nutrology (OR=6.9; 95%CI 5.6-8.4; p<0.001). Logistic regressions demonstrated that PCD patients followed by ≥3 specialties were associated with high risk for: number of appointments/patient (OR=9.2; 95%CI 8.0-10.5; p<0.001), day hospital clinic visits (OR=4.8; 95%CI 3.8-5.9; p<0.001), emergency department visits (OR=3.2; 95%CI 2.9-3.5; p<0.001), hospitalizations (OR=3.0; 95%CI 2.7-3.3; p<0.001), intensive care admissions (OR=2.5; 95%CI 2.1-3.0; p<0.001), and deaths (OR=2.8; 95%CI 1.9-4.0; p<0.001). The diagnosis of asthma, obesity, chronic pain, and transplant was significantly higher in patients followed by ≥3 specialties. Conclusions: The present study showed that PCD patients who required simultaneous care from multiple medical specialties had complex and severe diseases, with specific diagnoses.

RESUMO Objetivo: Avaliar dados demográficos e características de crianças e adolescentes com doenças crônicas pediátricas, de acordo com o número de especialidades/paciente. Métodos: Realizou-se um estudo transversal com 16.237 pacientes com doenças crônicas pediátricas durante um ano. A análise foi feita em um sistema eletrônico, de acordo com número de consultas médicas para doenças crônicas pediátricas. Este estudo avaliou dados demográficos, características do seguimento, tipos de especialidades médicas, diagnóstico (10ª Revisão da Classificação Estatística Internacional de Doenças e Problemas Relacionados com a Saúde - CID-10), número de visitas e complicações agudas. Resultados: Os pacientes acompanhados por três ou mais especialidades simultaneamente tiveram seguimento de maior duração comparados com aqueles seguidos por ≤2 especialidades [2,1 (0,4-16,4) vs. 1,4 (0,1-16,2) anos; p<0,001], bem como maior número de consultas em todas as especialidades. As áreas médicas mais comuns em pacientes acompanhados por ≥3 especialidades foram: psiquiatria (Odds Ratio - OR=8,0; intervalo de confiança de 95% - IC95% 6-10,7; p<0,001); dor/cuidados paliativos (OR=7,4; IC95% 5,7-9,7; p<0,001); doenças infecciosas (OR=7,0; IC95% 6,4-7,8; p<0,001); nutrologia (OR=6,9; IC95% 5,6-8,4; p<0,001). As regressões logísticas mostraram que os pacientes com doenças crônicas pediátricas seguidos por ≥3 especialidades tinham alto risco para: maior número de consultas/paciente (OR=9,2; IC95% 8,0-10,5; p<0,001); atendimentos em hospital-dia (OR=4,8; 95%IC3,8-5,9; p<0,001); atendimentos em pronto-socorro (OR=3,2; IC95% 2,9-3,5; p<0,001); hospitalizações (OR=3,0; IC95%2,7-3,3; p<0,001); internação em terapia intensiva (OR=2,5; IC95% 2,1-3,0; p<0,001); óbitos (OR=2,8; IC95%1,9-4,0; p<0,001). Os diagnósticos de asma, obesidade, dor crônica, transplante e infecção do trato urinário foram mais frequentes nos pacientes seguidos por três ou mais especialidades. Conclusões: O presente estudo mostrou que pacientes com doenças crônicas pediátricas que necessitaram de múltiplas especialidades médicas simultaneamente apresentavam doenças complexas e graves, com diagnósticos específicos.

Interconsultas de cuidados paliativos para pacientes con cáncer en un hospital general: Características y oportunidad / Interconsultation on palliative care for patients with cancer in a general hospital. Features and opportunity

Las recomendaciones internacionales apuntan a la integración temprana de cuidados paliativos (CP) en cáncer a través de la atención simultánea y del entrenamiento de los equipos primarios. La Unidad de CP del Hospital General de Agudos E. Tornú realiza interconsultas para pacientes internados en el hospital y brinda capacitación a los equipos tratantes. El perfil de las interconsultas realizadas podría brindar información importante sobre las características de la intervención de CP dentro de la institución. El objetivo de este estudio fue analizar retrospectivamente las interconsultas de primera vez de pacientes con cáncer realizadas a lo largo de 2 años, con foco en la temporalidad, la identificación de problemas por parte del equipo tratante y del equipo de interconsulta de CP, y la prontitud de respuesta y capacidad pronóstica de este último. La población atendida en interconsulta (168 casos) estuvo constituida principalmente por pacientes con enfermedad avanzada, deterioro del estado general, sin posibilidad de tratamiento oncológico y diagnóstico reciente. En aproximadamente 25% de los casos se encontraron indicios de intervención temprana y participación del equipo de CP en la toma de decisiones. Se discute la oportunidad de la intervención de CP y se señalan áreas con necesidad de mejora, como la identificación de síntomas no físicos y el pronóstico, a ser tenidas cuenta en las futuras actividades asistenciales y educativas.

The international recommendations point to the early integration of palliative care (PC) in cancer through simultaneous care and training of primary teams. The PC Unit of the Hospital General de Agudos E. Tornú conducts interconsultations for hospitalized patients in the hospital and provides training to the treatment teams. The profile of the interconsultations carried out could provide important information about the characteristics of the PC intervention within the institution. The objective of this study was to retrospectively analyze the first-time interconsultations of cancer patients carried out over 2 years, focusing on temporality, identification of problems by the treating team and the PC interconsultation team, the promptness of response and the prognostic capacity of the latter. In the period, 168 interconsultations were carried out. Most patients had advanced disease, poor performance status, no possibility of oncological treatment and recent diagnosis. In approximately 25% of the cases, evidence of early intervention and participation of the pc team in decision making was found. The opportunity of PC intervention is discussed and areas needing improvement are indicated, such as the identification of non-physical symptoms and prognosis, to be considered in future care and educational activities.

Resultados de um ano de atividade de uma unidade de cuidados paliativos em um hospital geral / Results of the first year of a Palliative Care Unit in a general hospital

INTRODUÇÃO: Este estudo teve o objetivo de apresentar os resultados do primeiro ano de atendimento da Unidade de Cuidados Paliativos de um hospital geral de média complexidade. MÉTODO: Foram coletados dados demográficos, clínicos, status funcional e o número de mortes ocorridas no hospital dos pacientes internados no primeiro ano da unidade, os quais foram analisados por estatística descritiva. RESULTADOS: Foram atendidos 129 pacientes (140 internações e 11 reinternações), com idade média de 80 anos, e 57% eram mulheres. Em 67% das internações na unidade, os pacientes morreram, e em 32%, receberam alta. O tempo médio de internação foi de 11,1 dias e o tempo médio na Unidade de Cuidados Paliativos foi de 5,5 dias. A maioria dos pacientes tinha doenças neurológicas, como sequelas de doenças cerebrovasculares e síndromes demenciais, e baixo escore de funcionalidade. Dos óbitos ocorridos na instituição no período analisado, 59% foram na Unidade de Cuidados Paliativos, com maior proporção nas faixas etárias mais elevadas. CONCLUSÃO: A unidade atendeu uma demanda existente relacionada ao aumento das doenças crônicas e ao envelhecimento populacional, que necessitam de cuidados paliativos. É necessário expandir o acesso aos cuidados paliativos para pacientes internados em hospitais.

INTRODUCTION: This study aimed to report the results of a Palliative Care Unit's first year of operation in a general hospital of medium-complexity care. METHOD: Data on demographic and clinical characteristics, functional status, and number of in-hospital deaths were collected regarding patients admitted to the unit during its first year of operation. Descriptive statistics were used to analyze the data. RESULTS: In total, 129 patients were treated (140 admissions and 11 readmissions). Their mean age was 80 years, and 57% were female. Patients died in 67% of unit admissions, while in 32% they were discharged. The mean length of hospital stay was 11.1 days, and the mean length of Palliative Care Unit stay was 5.5 days. Most patients had neurological conditions, such as sequelae of cerebrovascular diseases and dementia syndromes, and low functional scores. Of all in-hospital deaths recorded in the period, 59% occurred in the Palliative Care Unit, with a higher proportion in older ages. CONCLUSION: The unit met an existing demand related to increased prevalence of chronic diseases and population aging, requiring palliative care services. Expanding access to palliative care is needed for patients admitted to hospitals.

Encuesta en población abierta respecto a términos relacionados con decisiones al final de la vida / Open population survey regarding terms related to decisions at the end of life

Resumen Introducción: Conceptos relacionados con las decisiones que se toman al final de la vida, como eutanasia, cuidados paliativos, voluntad anticipada y obstinación terapéutica son poco comprendidos por la población en general, que en el momento de enfrentar una situación terminal no está preparada para elegir la mejor opción. Objetivo: Estudio piloto (n = 544) para conocer lo que la población abierta entiende acerca de términos utilizados al final de la vida en cuatro ciudades de la república mexicana. Método: Encuesta vía internet de 18 preguntas sobre los distintos términos. Se trató de un estudio descriptivo, transversal, con análisis estadístico. Resultados: Se eligieron personas mayores de 18 años que no trabajaran en profesiones relacionadas con la salud. Conclusiones: La mayoría de los términos del final de la vida no interesaron ni fueron entendidos por parte de la población. El término menos reconocido fue la obstinación terapéutica (62.8 %) y el más conocido, cuidados paliativos (91 %); se confunden los términos eutanasia y suicidio asistido (47.8 %). La edad y escolaridad resultaron de mayor influencia en los resultados, que las otras variables demográficas.

Abstract Introduction: Concepts related to end-of-life decisions, such as euthanasia, palliative care, advance directives and therapeutic obstinacy, are poorly understood by the general population, which, when facing a terminal situation, is not prepared to choose the best option. Objective: Pilot study (n = 544) to find out what the open population understands about terms used in end-of-life situations in four cities of the Mexican Republic. Method: Survey via Internet with 18 questions about different terms. It was a descriptive, cross-sectional study. Statistical analysis was carried out. Results: People older than 18 years who were not engaged in health-related professional activities were selected. Conclusions: Most terms related to end-of-life decisions were found not to be interesting to or understood by a part of the population. The least recognized term was therapeutic obstinacy (62.8%), and the most widely known, palliative care (91%); there was confusion between the terms euthanasia and assisted suicide (47.8%). Age and education level had more influence in the results, than other demographic variables.

Prognostic factors in cancer patients with palliative needs identified by the NECPAL CCOMS-ICO© TOOL

The early identification of patients with palliative needs has shown benefits in terms of quality of life and treatment goals. No prospective methods have been applied in Argentina to identify palliative needs in cancer patients. The NECPAL tool combines the physician's own insight with objective indicators of disease progression and indicators of chronic advanced conditions. The aim of this study was to identify prognostic factors of mortality in hospitalized and ambulatory patients with cancer and palliative needs according to the NECPAL tool in a University Hospital in Buenos Aires city. Study variables were obtained by interviews with 10 physicians in charge of 317 patients with cancer over a 2-year follow-up period. A total of 183 patients with palliative needs were labelled as NECPAL+. Of these, 137 died after a median 4-month follow-up period. The death rate was 11% patients/month. The mortality was higher in inpatients during the first month (p < 0.003). In the multivariate model, the best predictors of mortality combining relevant indicators were: inpatients (HR 1.87; 95% CI 1.24-2.84; p = 0.003), initial diagnosis other than breast cancer (HR 2.04; 95% CI 1.23-3.40; p = 0.006), metastatic disease (HR 1.67; 95% CI 1.15-2.42; p = 0.007), functional deterioration (HR 1.95; 95% CI 1.28-2.97; p = 0.002), and malnutrition (HR 1.53; 95% CI 1.04-2.23; p = 0.02 9). The major breakthrough was the systematic prospective identification of palliative needs in cancer patients for the first time in Argentina. The NECPAL tool can improve the prediction of mortality in hospital settings.

La identificación temprana de pacientes con necesidades paliativas ha demostrado beneficios en términos de calidad de vida y objetivos de tratamiento. En Argentina no han sido aplicados métodos prospectivos para identificar necesidades paliativas en pacientes con cáncer. El NECPAL CCOMS-ICO © combina la percepción del médico con indicadores objetivos de progresión de enfermedades crónicas avanzadas y es útil para determinar la prevalencia de pacientes con necesidades paliativas en la población general. El objetivo fue identificar factores pronósticos de mortalidad en pacientes internados y ambulatorios con cáncer y necesidades paliativas según NECPAL en un Hospital Universitario de la ciudad de Buenos Aires. Las variables se obtuvieron mediante entrevistas a 10 médicos a cargo de 317 pacientes con cáncer y necesidades paliativas durante dos años de seguimiento. Los predictores de mortalidad en el modelo multivariado fueron: hospitalización (HR 1.87; IC 95% 1.24-2.84; p = 0.003), diagnóstico distinto de cáncer de mama (HR 2.04; IC 95% 1.23-3.40; p = 0.006), enfermedad metastá sica (HR 1.67; IC 95% 1.15-2.42; p = 0.007), deterioro funcional (HR 1.95; IC 95% 1.28-2.97; p = 0.002) y nutricional (HR 1.53; IC 95% 1.04-2.23; p = 0.029). De los 183 pacientes con necesidades paliativas identificados como NECPAL+, 137 murieron en un período medio de 4 meses. La tasa de mortalidad fue 11% por mes. La mortalidad fue mayor (p < 0.003) en el primer mes de hospitalización. El mayor logro fue la identificación sistemática y prospectiva, por primera vez en Argentina, de necesidades paliativas en pacientes con cáncer. La herramienta NECPAL puede mejorar la predicción de la mortalidad en entornos hospitalarios.

Clinical and laboratory characteristics associated with referral of hospitalized elderly to palliative care / Características clínicas e laboratoriais associadas à indicação de cuidados paliativos em idosos hospitalizados

ABSTRACT Objective To investigate clinical and laboratory characteristics associated with referral of acutely ill older adults to exclusive palliative care. Methods A retrospective cohort study based on 572 admissions of acutely ill patients aged 60 years or over to a university hospital located in São Paulo, Brazil, from 2009 to 2013. The primary outcome was the clinical indication for exclusive palliative care. Comprehensive geriatric assessments were used to measure target predictors, such as sociodemographic, clinical, cognitive, functional and laboratory data. Stepwise logistic regression was used to identify independent predictors of palliative care. Results Exclusive palliative care was indicated in 152 (27%) cases. In the palliative care group, in-hospital mortality and 12 month cumulative mortality amounted to 50% and 66%, respectively. Major conditions prompting referral to palliative care were advanced dementia (45%), cancer (38%), congestive heart failure (25%), stage IV and V renal dysfunction (24%), chronic obstructive pulmonary disease (8%) and cirrhosis (4%). Major complications observed in the palliative care group included delirium (p<0.001), infections (p<0.001) and pressure ulcers (p<0.001). Following multivariate analysis, male sex (OR=2.12; 95%CI: 1.32-3.40), cancer (OR=7.36; 95%CI: 4.26-13.03), advanced dementia (OR=12.6; 95%CI: 7.5-21.2), and albumin levels (OR=0.25; 95%CI: 0.17-0.38) were identified as independent predictors of referral to exclusive palliative care. Conclusion Advanced dementia and cancer were the major clinical conditions associated with referral of hospitalized older adults to exclusive palliative care. High short-term mortality suggests prognosis should be better assessed and discussed with patients and families in primary care settings.

RESUMO Objetivo Investigar as características clínicas e laboratoriais associadas à indicação de cuidados paliativos exclusivos em idosos gravemente enfermos. Métodos Neste estudo retrospectivo de coorte, foram incluídas 572 admissões de pacientes gravemente enfermos com idade igual ou superior a 60 anos, em um hospital universitário, em São Paulo, no período de 2009 a 2013. O desfecho primário foi a indicação clínica de cuidados exclusivamente paliativos. Empregamos avaliações geriátricas amplas padronizadas para mensurar preditores de interesse, incluindo informações sociodemográficas, clínicas, cognitivas, funcionais e laboratoriais. Utilizamos modelos de regressão logística stepwise para identificar preditores independentes de cuidados paliativos. Resultados Foram indicados cuidados exclusivamente paliativos em 152 (27%) casos. No grupo de cuidados paliativos, a mortalidade hospitalar foi de 50%, sendo que a mortalidade acumulada em 12 meses atingiu 66%. Os diagnósticos mais frequentemente apontados como motivadores de cuidados paliativos foram demência avançada (45%), câncer (38%), insuficiência cardíaca congestiva (25%), insuficiência renal estágios 4 e 5 (24%), doença pulmonar obstrutiva crônica (8%) e cirrose (4%). As complicações mais comuns no grupo de cuidados paliativos foram delírio (p<0,001), infecções (p<0,001) e úlceras por pressão (p<0,001). Após análise multivariada, sexo masculino (OR=2,12; IC95%: 1,32-3,40), câncer (OR=7,36; IC95%: 4,26-13,03), demência avançada (OR=12,6; IC95%: 7,5-21,2) e níveis de albumina (OR=0,25; IC95%: 0,17-0,38) foram identificados como preditores independentes da indicação de cuidados exclusivamente paliativos. Conclusão Demência avançada e câncer foram as condições clínicas mais frequentemente associadas à indicação de cuidados paliativos exclusivos em idosos hospitalizados. A elevada mortalidade a curto prazo sugere que o prognóstico deva ser melhor avaliado e discutido com os pacientes e suas famílias no ambiente de Atenção Primária.

Análise dos óbitos e cuidados paliativos em uma unidade de terapia intensiva neonatal / Analysis of death and palliative care in a neonatal intensive care unit

RESUMO Objetivo: Caracterizar as crianças admitidas na Unidade de Terapia Intensiva Neonatal de um hospital universitário terciário que foram a óbito no período de 1.º/01/2012 a 31/07/2014 e que necessitavam de cuidados paliativos e/ou para as quais foram indicados tal tipo de cuidado. Métodos: Realizou-se estudo descritivo retrospectivo. Foi feita revisão dos prontuários desses pacientes para coleta de dados e análise estatística descritiva. Resultados: No período estudado 49 crianças morreram após, no mínimo, 48 horas de internação. Destas, 18% eram prematuros extremos e 77% apresentavam malformações maiores. Apesar de necessários a todos, cuidados paliativos foram realizados apenas em 20% dos casos de óbito. Dos 12 bebês que não foram reanimados, 33% não estavam em cuidados paliativos. A Unidade de Dor e Cuidados Paliativos da instituição acompanhou somente quatro crianças que ficaram em cuidados paliativos. Foram observados uso de muitos dispositivos invasivos e alto investimento terapêutico, além de escores de escala de dor alterados. Conclusões: Detectou-se neste estudo grande proporção de recém-nascidos com doenças e condições graves de saúde. Em alguns poucos casos foram estabelecidos cuidados paliativos, porém para a maior parte não foi nem discutido tal cuidado. Espera-se que este trabalho chame a atenção para a necessidade da proposição de protocolos nessa unidade e capacitação de equipes para o melhor tratamento dessas crianças.

ABSTRACT Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children.

Comparação entre Escala de Performance de Karnofsky e Escala de Avaliação de Sintomas de Edmonton como determinantes na assistência paliativa / Comparison of Karnofsky Performance Status Scale and Edmonton Symptom Assessment Scale as determinants in Palliative Assistance

Objetivo: Confrontar a baixa capacidade física do paciente com o número de sintomas apresentados, identificando o melhor momento para iniciar a intervenção paliativa. Métodos: Estudo de coorte em uma enfermaria geral de clínica médica com busca ativa por pacientes que necessitariam de assistência paliativa, aplicando a Escala de Performance de Karnofsky e a Escala de Avaliação de Sintomas de Edmonton. Foram avaliados 98 pacientes, com, no mínimo, 48 horas de internação, no período de 22 a 31 de julho de 2015. Resultados: Dentre os pacientes que necessitavam de cuidados paliativos, 21% apresentavam Escala de Perfomance de Karnofsky de 100% (sem sinais ou queixas e sem evidência de doença) e possuíam uma quantidade superior a cinco sintomas de graduações altas que necessitariam de abordagem. Porém, quando a dependência era acentuada, com Escala de Perfomance de Karnofsky de 30% (extremamente incapacitado, necessitando de hospitalização, mas sem iminência de morte), os pacientes apresentavam quantidade inferior a cinco sintomas na Escala de Avaliação de Sintomas de Edmonton. Conclusão: Quanto maior o grau de independência, maior a quantidade de sintomas e mais expressivas foram as queixas. Seria vantajoso, para o paciente e seus familiares, uma assistência paliativa precoce; pois, se estes sintomas forem corretamente controlados, seria possível viver de uma forma mais digna. Já quando a dependência física é alta, os sintomas tenderam a ser menos expressivos, diminuindo as opções para atingir uma melhor qualidade de vida, justificando também a realização de uma abordagem paliativa logo após o diagnóstico.

OBJECTIVE: To confront the patient's low physical capacity with their symptoms, identifying the best moment to iniciate palliative intervention. METHODS: Cohort study in a general clinic infirmary with active search of patients that require palliative assistance, through the application of Karnofsky Performance Status Scale and Edmonton Symptoms Assessment Scale. Ninetyeight patients with at least 48 hours of hospitalization were analyzed from July 22 to 31, 2015. RESULTS : Of the patients in need for palliative assistance, 21% had a 100% score in the Karnofsky Performance Status Scale (no signs or complaints; no evidence of disease) and had more than five high-ranking symptoms that would require palliative approach. Nevertheless, when the symptoms were severe, presenting a 30% score in the Karnofsky Performance Status Scale (extremely incapacitated in need for hospitalization, but no imminence of death), patients showed less than five symptoms in Edmonton Symptoms Assessment Scale. CONCLUSI ON: The greater the independency, the more symptoms and more expressive the complaints. An early palliative assistance would be beneficial for the patients and their family, because if those symptoms were correctly controlled, that would allow the patients to live a more decent life. However, when physical dependency is high, the symptoms tend to be less expressive, reducing the options to achieve a better quality of life, what warrants a palliative approach right after the diagnosis.

Consultas de niños pasibles de cuidados paliativos al Departamento de Emergencia Pediátrica del Centro Hospitalario Pereira Rossell 2014- 2015 / Consultation of children in need of palliative care to the Pereira Rossell Hospital Center's, Pediatric Emergency Department 2014-2015

Introducción: la asistencia de niños con condiciones de salud pasibles de Cuidados Paliativos (CP) en servicios de emergencia pediátrica constituye un desafío para los equipos de salud. Objetivo: describir la prevalencia de consultas, problemas de salud y características de niños pasibles de CP asistidos en el Departamento de Emergencia Pediátrica del Centro Hospitalario Pereira Rossell. Metodología: estudio descriptivo, retrospectivo entre el 20/06/2014 y el 19/06/2015. Variables: edad, condición de salud, requerimiento de prótesis, motivo de consulta, existencia de: consulta previa, pediatra tratante, vinculación con Unidad de Cuidados Paliativos Pediátricos (UCPP), directivas anticipadas y condición al egreso. Resultados: se incluyeron 175 niños pasibles de CP. Éstos significaron 0,7% (340/ 46.706) de las consultas en el período analizado. Mediana de edad: 5,7 años, (1 mes - 16 años). Presentaban afectación neurológica severa 65%; portaban prótesis o dispositivo de tecnología médica 50,3% (11% más de una); consultaron por infecciones 42% (respiratoria 81%), problemas neurológicos 20,3% (convulsiones 87%). Presentaban consulta previa por igual motivo 93%. Refirieron: contar con pediatra tratante 66,3%; estar vinculados con la UCPP 42,3%; contaban con directivas anticipadas 20%. Ingresaron a: cuidados moderados 39%; terapia intensiva 2%. No se registraron fallecimientos. Conclusiones: se constataron diversas situaciones y características de los pacientes incluidos que traducen la complejidad de su condición clínica y eventuales dificultades para el abordaje en el primer nivel de atención o en sus departamentos de procedencia.

Introduction: the assistance of children in need of Palliative Care (CP) in pediatric emergency services is a challenge for health teams. Objective: To describe the prevalence of consultations, health problems and characteristics of children in need of PC assisted in the Pereira Rossell Hospital Center Pediatric Emergency Department. Methodology: descriptive, retrospective study between 20/06/ 2014- 19/06/2015. Variables: age, health condition, prosthesis, previous consultation, attending pediatrician, relation with Pediatric Palliative Care Unit (UCPP), advanced care plan and condition at discharge. Results: 175 children in need of PC were included which represented 0.7% (340 / 46,706) of consultations in the period. Median age: 5.7 years (1 month - 16 years); 65% had severe neurological impairment; 50.3% carried prosthesis or medical technological devices (11% more than one); reason for consultation was: 42% infections, 42% (81% respiratory), 20. 3% neurological problems (87% seizures); 93% presented a previous consultation for the same reason; 66.3% reported having an attending pediatrician; 42.3% were under UCPP assistance; 20% had advanced care plan. At discharge: 39% were admitted in moderate care; 2% in intensive care. No deaths were recorded. Conclusion: the different situations and characteristics of the patients included represent the complexity of their clinical condition and may be related to possible difficulties in addressing their problems at the primary care level or their provinces of origin.

Atención paliativa en personas con enfermedades crónicas avanzadas / Palliative care needs in advanced chronic illness

Alrededor del 75% de las personas morirá a causa de una o varias enfermedades crónicas progresivas. A partir de esta proyección, la OMS instó a los países a diseñar estrategias para el fortalecimiento de los cuidados paliativos como parte del tratamiento integral. En Cataluña, España, la medición de la prevalencia de estos pacientes según el debe decir NECPAL CCOMS-ICO© fue de 1.5% de la población. Es una evaluación cuali-cuantitativa, multifactorial indicativa y no dicotómica que completa el médico tratante. En Argentina no conocemos información sobre estos enfermos. Nuestro objetivo fue explorar y caracterizar en una población accesible de la Ciudad Autónoma de Buenos Aires la proporción de pacientes crónicos con necesidades de atención paliativa, mediante el NECPAL CCOMS-ICO©. Se relevaron los hospitales generales de la Región Sanitaria 2: (Piñero, Álvarez y Santojanni) y sus áreas programáticas. En la Región Sanitaria 1 se incorporó al hospital Udaondo de gastroenterología. Se entrevistaron 53 médicos (704 pacientes). Se identificó que 29.5% presentaba enfermedades crónicas avanzadas; el 72.1% de esos pacientes eran NECPAL positivos, más jóvenes que en otros estudios (mediana 64) y más del 98% tenían alto índice de comorbilidad. Se registró la demanda (31.4%) y necesidad (52.7%) de atención paliativa. Se describieron indicadores específicos de fragilidad, progresión y gravedad según enfermedad crónica. El principal hallazgo fue identificar, con un instrumento no basado en la mortalidad, que, en la ciudad de Buenos Aires, 1 de cada 3 pacientes con enfermedades crónicas podría morir en el próximo año y tenía necesidades de atención paliativa.

About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, Álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs.

Cancer patients, emergencies service and provision of palliative care / Pacientes oncológicos, serviço de urgência e oferta de cuidados paliativos

SUMMARY Objective: To describe the clinical and sociodemographic profile of cancer patients admitted to the Emergency Center for High Complexity Oncologic Assistance, observing the coverage of palliative and home care. Method: Cross sectional study including adult cancer patients admitted to the emergency service (September-December/2011) with a minimum length of hospital stay of two hours. Student’s t-test and Pearson chi-square test were used to compare the means. Results: 191 patients were enrolled, 47.6% elderly, 64.4% women, 75.4% from the city of Recife and greater area. The symptom prevalent at admission was pain (46.6%). 4.2% of patients were linked to palliative care and 2.1% to home care. The most prevalent cancers: cervix (18.3%), breast (13.6%) and prostate (10.5%); 70.7% were in advanced stages (IV, 47.1%); 39.4% without any cancer therapy. Conclusion: Patients sought the emergency service on account of pain, probably due to the incipient coverage of palliative and home care. These actions should be included to oncologic therapy as soon as possible to minimize the suffering of the patient/family and integrate the skills of oncologists and emergency professionals.

RESUMO Objetivo: descrever o perfil clínico e sociodemográfico de pacientes oncológicos atendidos na emergência de um Centro de Alta Complexidade em Oncologia, observando a cobertura dos cuidados paliativos e assistência domiciliar. Método: estudo de corte transversal com adultos oncológicos atendidos na emergência (setembro a dezembro de 2011) e tempo de permanência superior a 2 horas. Usaram-se teste t-Student de comparação de médias e qui-quadrado. Resultados: participaram 191 pacientes, 47,6% idosos, 64,4% mulheres e 75,4% procedentes de Recife e região metropolitana. Dor (46,6%) foi o sintoma prevalente à admissão. Os pacientes sob cuidados paliativos eram 4,2% e sob atenção domiciliar, 2,1%. Os cânceres mais frequentes foram colo uterino (18,3%), mama (13,6%) e próstata (10,5%), sendo 70,7% em estadios avançados (IV, 47,1%) e 40% sem terapia oncológica. Conclusão: a procura da emergência por causa de dor deveu-se, provavelmente, à baixa cobertura de cuidados paliativos e atenção domiciliar, os quais precisam ser associados precocemente à terapia oncológica para minimização do sofrimento dos pacientes/familiares e integrar as competências de oncologistas e profissionais de emergências.

¿Cuánta información desean recibir y cómo prefieren tomar sus decisiones pacientes con cáncer avanzado atendidos en una Unidad del Programa Nacional de Dolor y Cuidados Paliativos en Chile? / Information disclosure and decision making preferences of patients with advanced cancer in a Pain and Palliative Care Unit in Chile

Information disclosure and decision making process are important steps in advanced cancer patients management; however, there is no research done in this area in Chile. Aims: To know the preferences of patients with advanced cancer related to information disclosure and style of decision making process. Methods: Prospective observational study with patients in the Palliative Care Unit of Sótero del Río Hospital, in Santiago, Chile. The preferences were evaluated with a Disclosure Information and a Decision Making Preferences Questionnaire. Results: 100 patients were recruited, 52% males, average age 63 years; 90% wanted to receive complete information about diagnosis and 89% complete information about prognosis. The preferences related to decision making process style were: 60% shared, 27% passive and 13% active. The expressed satisfaction with the information received was 89% and 87% with the way decisions were actually made. Conclusions: A majority of patients preferred to receive complete information about diagnosis and prognosis and to make shared decisions. The satisfaction with information disclosure and decision making process was very high. The data of this study supports the need of an adequate information disclosure and of exploring the individual preferences of our patients, with the goal of promoting an informed decision making process that respects the preferences of our patients.

Eficacia del Programa Alivio del Dolor por Cáncer Avanzado y Cuidados Paliativos de Chile / Efficacy of Management Pain for advanced Cáncer and Palliative Care Program Chile

El sostenido aumento de enfermedades neoplásicas ha generado inquietud por mejorar la calidad de vida de pacientes con cáncer avanzado, a través del apropiado manejo del dolor y de brindar cuidados paliativos en estos pacientes. Con esta visión, el año1995 surge el Programa Nacional de Alivio del Dolor por Cáncer y Cuidados Paliativos (PAD y CP) del Ministerio de Salud de Chile, el cual posteriormente se incorpora al sistema de Acceso Universal a Garantías Explícitas en Salud (GES) para el manejo de pacientes con cáncer avanzado. El presente estudio evaluó la efectividad de este programa en cuanto a la disminución de dolor en los pacientes atendidos desde el año 1995 a 2009, en la red de salud pública del país, y su relación a factores clínicos y sociodemográficos. Metodología: Se consideró el universo de pacientes atendidos yegresados del programa por fallecimiento al año 2009. Se analizaron asociaciones entre variables sociodemográficas y clínicas, a través de análisis de correspondencia y regresión logística, multinomial y ordinal, y se evaluó la sobrevida de los pacientes desde el ingreso.La disminución de dolor se midió a través de la variación obtenida en la Escala Visual Análoga (EVA) entre el ingreso y el egreso al programa. Como mejoría del dolor, se consideró lograr una reducción de al menos un 50 por ciento del dolor reportado al ingreso. La asociación a mejoría de dolor de factores clínicos o demográficos, se evaluó por regresión logística múltiple. Resultados: La mediana de sobrevida encontrada en la serie fue de 3 meses. La mejoría de al menos el 50 por ciento del EVA de ingreso se logró en el 90 por ciento de los casos. Esta respuesta se asoció directamente a mayor severidad de dolor al ingreso e inversamente,a ocho localizaciones específicas de cáncer y tumores de origen desconocidos, permitiendo la creación de un modelo predictivo de mejoría de dolor, de alta sensibilidad (cercana a 100 por ciento), valor predictivo positivo y negativo...

The sustained increase of neoplastic diseases has generated concern to improve the quality of life of patients with advanced cancer, providing appropriate pain managementand palliative care in these patients. With this vision, in 1995the National Program of Cancer Pain Relief and Palliative Care(PAD and CP) of the Ministry of Health was created in Chilean later incorporated to the Universal access system for Explicit Guarantees on Health (GES) for the management of patients with advanced cancer. This study evaluated the efficacy of this program in terms of decreasing pain in patients attended from 1995 to 2009, in the public health network,and its relationship to clinical and sociodemographic factors. Methodology: All patients attended and graduated from the program due to death until 2009 were considered like study's universe. We analyzed associations between sociodemographic and clinical variables by correspondence analysis and logistic regression, multinomial and ordinal, and we evaluated the survival of patients from admission. The decrease of pain was measured through the variation obtained in the Visual Analogue Scale (VAS) between admission and exit the program. Pain relief is considered as achieving a reduction of at least 50 percent reported pain at admission time. The association between clinical improvement in pain and clinical and demographic factors was assessed by multiple logistic regression. This response was directly associated with higher severity of pain at admission and inversely, with eight specific locations of cancer and tumors of unknown origin, allowing us to create a predictive model about improving pain with high sensitivity(near 100 percent), positive and negative predictive value (about80 percent).Conclusions: The PAD and CP program is effective in reducing pain in advanced cancer. This improvement can be affected by the lower intensity of pain at entry to the program and determined locations of neoplastic disease...

Caracterización de los pacientes oncológicos que fallecieron durante los años 2010 y 2011 en la unidad de alivio del Dolor y cuidados paliativos de Oncomed, Santiago, Chile / Characterization of cancer patients who died during 2010 and 2011 in the unit of pain relief and palliative care of Oncomed, Santiago, Chile

Objetivo: Averiguar las principales características de los pacientes pertenecientes a la Unidad de Alivio del Dolor y Cuidados Paliativos de Oncomed que fallecieron entre los años 2010 y 2011.Método: Se realizó un estudio retrospectivo, descriptivo y transversal de los pacientes pertenecientes a la Unidad que fallecieron durante los años 2010 y 2011. Se seleccionaron enfermos con patología oncológica terminal y que tuvieron como mínimo 1 atención médica. Se analizaron las variables de edad, sexo, patología oncológica, ciudad de residencia, tiempo de permanencia en la unidad y lugar de fallecimiento. Resultados: De los 832 pacientes, 46,2 por ciento fueron de sexo femenino y 53,8 por ciento masculino. Las edades fluctuaron entre los 3 y los 103 años, encontrándose el mayor número de enfermos entre los 40 y 80 años. Las patologías más comunes fueron cáncer de pulmón, próstata y gástrico, en el sexo masculino; y mama, pulmón y páncreas, en el sexo femenino. El mayor número de pacientes se localizó en la XIII Región. El tiempo promedio de sobrevida de los pacientes fue de 140 días, fluctuando entre 1 y 1.819 días. Un 73,4 por ciento de los pacientes falleció en el domicilio y un 26,6 por ciento hospitalizado. Conclusión: El estudio realizado resulta interesante ya que nos aporta conocimiento de las características de los pacientes que se atienden en nuestra unidad y eso nos ayuda a mejorar la planificación y organización de los servicios sanitarios, orientándolos a dar una mejor respuesta a las necesidades y demandas de nuestros enfermos.

Objective: To identify the main characteristics of patients belonging to the unit for Pain Relief and Palliative Care of Oncomed, who died in 2010 and 2011.Method: A retrospective, descriptive and transversal study has been done of the patients treated in the unit, who died during years 2010 and 2011. Patients with terminal cancer pathology have been selected, that have had at least one medical attention. The variables analyzed were age, sex, oncologic pathology, city of residence, length of stay in the unit and place of death. Results: Of the 832 patients, 46.2 percent were female and 53.8 percent male. The ages ranged from 3 to 103 years old, finding the largest number of patients between 40 and 80. The most common diseases were lung, prostate and gastric cancers in males and breast, lung and pancreas cancers in women. The largest number of patients was located in the XII Region. The median survival time of patients was 140 days, ranging between 1 and 1819 days. 73.4 percent of patients died at home and 26.6 percent at hospitals. Conclusion: The study shows interesting results, providing knowledge of the characteristics of our patients, helping us to improve the planning and organization of health services, focusing them to meet in a better way the requirements and demands of our patients.

Dependencia funcional y deterioro cognitivo de pacientes con cáncer avanzado atendidos en domicilio / Functional dependence and cognitive deterioration in patients with advanced cancer cared for at home

Objetivo: Evaluar la dependencia funcional y el deterioro cognitivo de los pacientes con cáncer avanzado atendidos en sus domicilios dentro de un programa de cuidados paliativos desarrollado por una Unidad de Hospitalización a Domicilio perteneciente a un hospital de tercer nivel (agudos). Pacientes y métodos: Se analizaron 3063 pacientes que corresponden a la totalidad de enfermos de cáncer avanzado atendidos por la unidad entre enero 2000 y diciembre de 2009. Resultados: Se destaca la fuerte dependencia física y el marcado deterioro cognitivo de los pacientes al ingreso en el programa. La estancia media fue de 12 días (desviación estándar 18). El 57.5% de los pacientes falleció en su propio domicilio, el 12% reingresó en nuestro hospital y el 11% fue derivado a una unidad de cuidados paliativos de hospital sociosanitario. Los pacientes que fallecieron en el domicilio eran mayores (72 años) que los que reingresaron en el hospital (68) (p < 0.01) y al ser incluidos en el programa presentaban mayor nivel de dependencia funcional y deterioro cognitivo. Conclusiones: La complejidad relacionada con la dependencia funcional y el deterioro cognitivo de los pacientes y, como consecuencia, con la carga de cuidados que necesitan no determina el lugar de la muerte. La edad de los enfermos es un factor modulador de la ubicación del paciente a lo largo de la evolución de su enfermedad.

Frecuencia y pesquisa de síntomas en pacientes crónicos en fases avanzadas en un hospital clínico: ¿Existe concordancia entre pacientes y médicos? / Frequency and assessment of symptoms in hospitalized patient with advanced chronic diseases: Is there concordance among patients and doctors?

Physicians tend to over or underestimate symptoms reported by patients. Therefore standardized symptom scoring systems have been proposed to overcome this drawback. Aim: To estimate the prevalence and the diagnostic accuracy of physical and psychological symptoms and delirium in patients admitted to an internal medicine service at a university hospital. Material and Methods: We studied 58 patients, 45 with metastasic cancer and 13 with other advanced chronic diseases. The following scales were used: the Confusion Assessment Method for the diagnosis of delirium; the Edmonton Symptom Assessment Scale (ESAS) for pain and other physical symptoms; the Hospital Anxiety and Depression Scale to assess anxiety and depression. The ESAS was simultaneously applied to patients without delirium and their doctors to assess the level of diagnostic concordance. Results: Twenty two percent of patients had delirium. Among the 45 patients without delirium, 11 (25 percent) had at least eight symptoms and 39 (88.6 percent) had four symptoms. The prevalence of symptoms was very high, ranging from 22 to 78 percent. Pain, restlesness, anorexia and sleep disorders were the most common. The concordance between symptoms reported by patients and those recorded by doctor was very low, with a Kappa index between 0.001 and 0.334. Conclusions: In our sample of chronic patients, there is a very high frequency of psychological and physical symptoms that are insufficiently recorded by the medical team.