Gabapentin for Pain in Pediatric Palliative Care.

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.

CONTEXT: Since the publication of the IMPaCCT project in 2007, much effort has been made to develop new approaches to pediatric palliative care (PPC). Fifteen years later, it is time to redefine the standards in PPC. OBJECTIVES: An international group of experts in PPC has revised the standards in PPC through the GO-PPaCS project (Global Overview - PPC Standards). The goal was to update the PPC standards considering the specificity of different settings, resources, and emerging challenges. The present document is intended to reach all people directly or indirectly involved in PPC. METHODS: A literature review in MEDLINE was conducted to expand on the fundamental points and current standards on PPC and to cover an international setting. The literature search (updated on the 15th of April 2021) was carried out using different combinations of keywords and focusing on papers published in English over the past 5 years (2016-2020), but older articles were considered when relevant. The consensus on the fundamental points, standards of care and paper contents was reached by open discussion. RESULTS: Fundamental points were defined regarding the definition of PPC, eligibility criteria and the magnitude of the need for PPC, while standards were redefined for the following six areas: 1) clinical, developmental, psychological, social, ethical and spiritual needs; 2) end-of-life care; 3) care models and settings of care; 4) PPC in humanitarian emergencies; 5) care tools; and 6) education and training for healthcare providers. CONCLUSION: The present document, developed with the contribution of an international group of experts from different countries, experiences and models of care, provides fundamental points and standards for a wider implementation of PPC worldwide.

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination.

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.

Atención telefónica en cuidados paliativos pediátricos: motivos de consulta y satisfacción de las familias / Telephone attention in pediatric palliative care: reasons for consultation and family satisfaction levels / Assistência telefônica em cuidados paliativos pediátricos: motivos da consulta e grau de satisfação das famílias

Resumen: Introducción: los servicios de consulta telefónica insertos en programas de cuidados paliativos pediátricos (CPP), contribuyen a resolver algunos problemas, evitando, en ocasiones, consultas presenciales. Objetivo: describir las consultas telefónicas recibidas por la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (UCPP-CHPR), el nivel de resolutividad y el grado de satisfacción respecto a la consulta. Material y método: estudio descriptivo, prospectivo, del 1/8/2019 al 30/9/2019; revisión de registros de llamadas recibidas y encuesta telefónica posterior. Se incluyeron todas las consultas recibidas. Se analizaron variables demográficas, motivo de la llamada (administrativos, necesidad de intervención); nivel de satisfacción con la respuesta, capacidad de evitar consulta presencial. Resultados: se registraron 93 consultas telefónicas de 53 personas; mediana de edad 34 años, mujeres: 48/53; madres: 35; procedencia: sur del país 77; medio urbano: 64; motivos de consulta: administrativo 53/93 (solicitud de fármacos/insumos médicos 30, agendar consulta 14, solicitud de traslados 9); de necesidad de intervención 40/93 (síntomas molestos 12, problemas con prótesis 8, dudas respecto a fármacos 6, cuidados de enfermería 6, problemas psicoemocionales o sociales 4, respectivamente). En la opinión de las personas incluidas la consulta telefónica evitó una consulta/gestión presencial 66/93; expresaron satisfacción con las respuestas 91/93. Conclusiones: el alto número de consultas administrativas, la capacidad para evitar una consulta presencial y la satisfacción reportada por los padres y cuidadores posicionan a la consulta telefónica como un recurso a considerar, sistematizar y mejorar en la atención integral de niños con condiciones de salud pasibles de cuidados paliativos.

Summary: Introduction: telephone consultation services included in pediatric palliative care programs (PPC), contribute to solving some problems, and sometimes decrease in-person consultations. Objective: describe the telephone consultations received by the Pediatric Palliative Care Unit of the Pereira Rossell Children's Hospital Center (UCPP-CHPR), their level of resolution and satisfaction degree with the consultation. Materials and methods: prospective, descriptive study taking place from 8/1-9/30/2019; review of call records received and subsequent telephone survey. All queries received were included. We analyzed demographic variables, reason for the call (administrative, need for intervention), level of satisfaction with the response, success in decreasing in-person consultation. Results: we recorded 93 telephone consultations from 53 people; median age 34 years, women: 48/53; mothers: 35; origin: South of the country 77; urban centers: 64; reasons for consultation: administrative 53/93 (request for drugs/ medical supplies 30, schedule consultation 14, request for transfers 9); need for intervention 40/93 (discomforting symptoms 12, problems with prosthetics 8, doubts about drugs 6, nursing care 6, psycho-emotional or social problems 4). According to the people surveyed the telephone consultation saved an in-person consultation 66/93, expressed satisfaction with the answers 91/93. Conclusions: the high number of administrative consultations, the possibility of decreasing in-person consultations, and the satisfaction levels reported by parents and caregivers indicate that telephone consultations are a resource to consider, systematize and improve in order to provide a more comprehensive care for children with health conditions that may require palliative care.

Resumo: Introdução: os serviços de consulta telefônica, quando inseridos em programas de cuidados paliativos pediátricos (PPC), contribuem para a resolução de alguns problemas, evitando, às vezes, consultas presenciais. Objetivo: descrever: as consultas telefônicas recebidas na Unidade de Cuidados Paliativos Pediátricos do Centro Hospitalar Pereira Rossell (UCPP-CHPR); o seu nível de resolução e seu grau de satisfação em relação à consulta. Materiais e métodos: estudo descritivo, prospectivo, de 8/1/2019 a 30/9/2019; revisão dos registros das ligações recebidas e posterior pesquisa telefônica. Incluíram-se todas as consultas recebidas. Analisamos as variáveis demográficas, o motivo da ligação (administrativa, necessidade de intervenção); nível de satisfação com a resposta e capacidade de evitar a consulta presencial. Resultados: registraram-se 93 atendimentos telefônicos de 53 pessoas; idade média de 34 anos, mulheres: 48/53; mães: 35; origem: sul do país 77; centros urbanos: 64; motivos da consulta: administrativos 53/93 (solicitação de medicamentos/insumos médicos 30, agendamento da consulta 14, solicitação de transferências 9; necessidade de intervenção 40/93 (desconforto: 12, problemas com próteses 8, dúvidas sobre drogas 6, cuidados de enfermagem 6, problemas psicoemocionais ou sociais 4). Na opinião das pessoas pesquisadas a consulta telefônica evitou uma consulta/gestão presencial 66/93; manifestaram satisfação com as respostas 91/93. Conclusões: o elevado número de consultas administrativas, a possibilidade de evitar a consulta presencial e a satisfação relatada pelos pais e cuidadores em relação à consulta telefônica, sugere-a como recurso para organizar, sistematizar e aprimorar a atenção integral à criança que vai ser escolhida para receber cuidados paliativos.

Opinión de los profesionales de la salud sobre un documento de registro de directivas de adecuación de esfuerzo terapéutico en pediatría / Opinion of health professionals on a document to record guidelines for the adequacy of therapeutic efforts in pediatrics / Opinião dos profissionais de saúde sobre um documento de registro de diretrizes de adequação do esforço terapêutico em pediatria

Resumen: Introducción: en la asistencia médica de niños con enfermedades que amenazan o limitan la vida (EALV), en ocasiones, es necesario realizar adecuación del esfuerzo terapéutico (AET). La Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (UCPP-CHPR) implementó un procedimiento de toma de decisiones sobre AET y registro en la historia clínica. Objetivo: conocer la opinión de los profesionales de la salud respecto a la utilidad del documento de registro de AET, las principales dificultades encontradas y el interés en capacitarse al respecto. Material y método: estudio descriptivo, transversal, mediante encuesta a médicos y licenciados de enfermería del CHPR entre el 23 de octubre y el 12 de noviembre de 2018. Se contó con el aval del Comité de Ética. Resultados: 75,4% (181/240) de los encuestados había asistido a niños con registro de AET; ocasionalmente: 73,5%, frecuentemente: 21,5%. Consideraron útil contar con registros de AET: 30%, y muy útil: 58%. Expresaron encontrar dudas éticas, clínicas o legales, ocasionalmente: 51,4%, frecuentemente: 27,6%; las principales dudas: responsabilidad al cumplir las directivas y la falta de firma de los padres. Las principales dificultades referidas fueron que los padres no cuentan con el documento durante la atención y que éstos están angustiados y solicitan "hacer todo". La mayoría de los profesionales expresó que sería útil o muy útil recibir más información o capacitación sobre las directivas de adecuación del esfuerzo terapéutico (DAET). Conclusiones: la mayoría de los profesionales encuestados habían participado en la atención de niños con registro de AET. Consideraron útil, o muy útil, contar con estos registros, pero expresaron tener dudas clínicas, éticas o legales ocasionalmente.

Summary: Introduction: during the medical care of children with life-threatening or life-limiting conditions (EALV), sometimes is necessary to adequate the therapeutic effort (ATE). The pediatric palliative care unit of the Pereira Rossell Hospital Center (PPCU- PRHC) implemented a decision-making procedure on ATE and its registration in the clinical history. Objective: to know: the opinion of health care professionals regarding the utility of the ATE registration document, the main difficulties found, and the interest in training activities. Material and method: descriptive, cross-sectional study, by means of a survey of physicians and nurses working in the PRHC, between 23 / 10-12 / 11/2018. It was endorsed by the Ethics Committee. Results: 75.4% (181/240) of the respondents had attended children with ATE documents, occasionally: 73.5%, frequently: 21.5%. They considered it useful to have ATE records: 30% and very useful: 58%. They expressed to find ethical, clinical and / or legal doubts, occasionally: 51.4%, frequently: 27.6%; the main doubts: responsibility when fulfilling the directives and the lack of signature of the parents. The main difficulties referred to were: that the parents do not have the document at the consultation, and that they are distressed and ask to "do everything". Most professionals expressed that it would be useful or very useful to receive more information and/ or training on ATE. Conclusions: most of the professionals surveyed had participated in the care of children with ATE registration. They considered it useful or very useful to have these records, but they expressed occasional clinical, ethical and/ or legal doubts.

Resumo: Introdução: na assistência médica de crianças com enfermidades que ameaçam ou limitam a vida (EALV), em algumas ocasiões, é necessário adequar o esforço terapêutico (AET). A Unidade de Cuidados Paliativos pediátricos do Centro Hospitalario Pereira Rossell (UCPP- CHPR) implementou um procedimento para a tomada de decisões sobre AET e registro no prontuário do paciente. Objetivo: conhecer a opinião dos profissionais de saúde em relação à utilidade do documento de registro de AET, as principais dificuldades encontradas, e o interesse em capacitar-se no tema. Material e método: estudo descritivo, transversal, com entrevistas a médicos e enfermeiras do CHPR, no período 23 de outubro - 12 de novembro de 2018. O estudo obteve a aprovação do Comitê de ética. Resultados: 75,4% (181/240) dos entrevistados haviam atendido crianças com registro de AET - ocasionalmente: 73,5%, frequentemente: 21,5%. Consideraram - útil contar com registros de AET: 30% e muito útil: 58%. Declararam encontrar dúvidas éticas, clínicas e/ou legais: ocasionalmente: 51,4%; frequentemente: 27,6%; as principais dúvidas foram: responsabilidade no cumprimento das diretrizes e a falta da assinatura dos pais. As principais dificuldades relatadas foram: os padres não dispõem do documento durante a atenção, estão angustiados e solicitam "fazer tudo". A maioria dos profissionais declarou que seria útil ou muito útil receber mais informação e/ou capacitação sobre as DAET. Conclusões: a maioria dos profissionais entrevistados havia participado no cuidado de crianças com registro de AET. Consideraram útil ou muito útil contar com estes registros, porém expressaram ter dúvidas clínicas, éticas e/ou legais em algumas oportunidades.

Descripción del programa de atención domiciliaria de una unidad de cuidados paliativos pediátricos en su primer año de trabajo / Description of a palliative care home program during its first year at work / Descrição do programa de assistência domiciliar de cuidados palliativos pediátricos em seu primeiro ano de trabalho

Resumen: Introducción: la atención domiciliaria es una modalidad ideal de atención paliativa ya que puede evitar ingresos hospitalarios, disminuir consultas ambulatorias y mejorar la calidad de vida de pacientes y cuidadores. En Uruguay, desde 2015, la unidad de cuidados paliativos pediátricos del hospital público de referencia nacional inició atención domiciliaria coordinada. Objetivos: 1) describir las características de los niños asistidos en el primer año; 2) analizar las consultas en emergencia, hospitalizaciones y días de hospitalización el año previo y el posterior del inicio del programa. Material y método: estudio descriptivo, retrospectivo. Fuente: fichas anonimizadas del sistema informático. Participantes: todos los niños y adolescentes asistidos entre el 8 de junio de 2015 y el 8 de junio de 2016. Resultados: se incluyeron 64 niños, recibieron 289 visitas, mediana de edad: 6 años (2 meses-15 años); 64% tenía afectación neurológica severa no progresiva; dispositivos de tecnología médica: 64%. Mediana de visitas/ paciente: 4 (1-26). Frecuencia en el año previo / en el año posterior; (valor de p); magnitud de efecto (r) de las variables estudiadas: consultas en emergencia: 192/164; (p=0,14); r=0,19 (efecto bajo); número de hospitalizaciones: 81/42; (p=0,001); r=0,47 (efecto medio); días de hospitalización: 866/219; (p=0,000); r=0,59 (efecto grande). Conclusiones: en el primer año del programa de atención paliativa domiciliaria se redujeron significativamente las consultas en emergencia, hospitalizaciones y días de internación de los niños incluidos. Esta información puede ser útil para la implementación de nuevos servicios.

Summary: Introduction: home assistance is an ideal palliative care system because it can reduce hospital admission, outpatient visits and it can improve patients' and caregivers' quality of life. Since 2015, the pediatric palliative care unit of the main Uruguayan pediatric public hospital has provided coordinated home care. Objectives: 1) to describe the characteristics of the children assisted during the first year the program operated, 2) to analyze emergency consultations, hospitalizations and hospitalization days during the previous and the following year the program was started. Materials and methods: descriptive, retrospective study. Source: computerized anonymized files. Participants: all children and adolescents assisted between 6/8/ 2015- 6/8/ 2016. Results: the study included 64 children who received 289 visits, median age: 6 years (2 months - 15 years); 64% had severe non-progressive neurological impairment; Medical technological devices: 64%. Median visits / patient: 4 (1- 26). Frequency in the previous year / in the following year; p value; magnitude of effect (r) of the variables studied: emergency consultations: 192/164; (p=0.14); r=0.19 (low rate); number of hospitalizations: 81/42; (p=0,001); r=0,47 (average rate); hospital days: 866/219; (p=0,000); r=0.59 (high rate). Conclusions: during the first year that the home palliative care program was carried out, emergency consultations, hospitalizations and hospitalization days significantly dropped. This information could be useful for the implementation of new services.

Resumo: Introdução: a atenção domiciliar apresenta uma modalidade ideal de cuidados paliativos, pois pode evitar internações hospitalares, reduzir consultas ambulatoriais e melhorar a qualidade de vida de pacientes e cuidadores. No Uruguai, a unidade de cuidados paliativos pediátricos do hospital público nacional de referência iniciou atendimento domiciliar coordenado no ano 2015. Objetivos: 1) descrever as características das crianças assistidas no primeiro ano do programa, 2) analisar as consultas em emergência, internações e dias de internação no ano anterior e no ano seguinte ao início do programa. Materiais e métodos: estudo descritivo, retrospectivo. Fonte: arquivos anônimos computorizados. Participantes: todas as crianças e adolescentes atendidos desde 06/08/2015 a 06/08/2016. Resultados: o estudo incluiu 64 crianças, 289 visitas, mediana de idade: 6 anos (2 meses - 15 anos); 64% tinham comprometimento neurológico grave não progressivo; Dispositivos de tecnologia médica: 64%. Visitas medianas / paciente: 4 (1-26). Frequência no ano anterior / no ano posterior; (valor de p); magnitude do efeito (r) das variáveis ??estudadas: consultas de emergência: 192/164; (p = 0,14); r = 0,19 (taxa baixa); número de internações: 81/42; (p = 0,001); r = 0,47 (taxa média); dias de hospitalização: 866/219; (p = 0,000); r = 0,59 (taxa alta). Conclusões: no primeiro ano do programa de cuidados paliativos domiciliares, as consultas de emergência, hospitalizações e dias de internação das crianças incluídas reduziram-se significativamente. Esta informação pode ser útil no momento de implementar novos serviços.

Conocimientos del personal de enfermería de un hospital pediátrico de referencia respecto a la evaluación y abordaje del dolor en niños / Knowledge of nursing staff at a pediatric referral hospital regarding the assessment and management of pain in children

Resumen Introducción: El dolor es un motivo de consulta frecuente, por lo que la escasa formación profesional es referida como un componente crítico para su tratamiento adecuado. El objetivo de este estudio fue describir los conocimientos y prácticas del personal de enfermería del Hospital Pediátrico del Centro Hospitalario Pereira Rossell, con respecto a evaluación y abordaje del dolor en niños. Métodos: Se llevó a cabo un estudio descriptivo, transversal. Se aplicó una encuesta anónima el 1 de diciembre de 2016 en la que se incluyó a todos los enfermeros presentes ese día. Las variables que se consideraron fueron edad, sexo, años de trabajo, nivel formativo. Para la asociación de variables se utilizó la prueba de χ2. Se consideró un valor significativo p < 0.05. Resultados: La encuesta fue contestada por el 89.3% del personal presente: mediana de edad = 39 años (20-63), mujeres 81%; mediana de tiempo como enfermero pediátrico = 10 años (1 mes-38 años); grado máximo de formación: auxiliar (73%); nivel de conocimiento global: aceptable (61%). No se encontró asociación significativa entre conocimiento y edad, sexo, años de trabajo y nivel formativo. Las escalas de evaluación de dolor infantil menos reportadas: neonatos, niños de 1 a 3 años y niños con trastorno cognitivo; otros déficits de conocimientos detectados: intervalo interdosis de morfina, interpretar distracción del niño como ausencia de dolor, considerar la percepción del personal de salud experimentado como la herramienta más adecuada para medir el dolor. Conclusiones: Los enfermeros encuestados demostraron conocimientos aceptables sobre evaluación y abordaje del dolor. No obstante, se objetivaron aspectos a mejorar en el conocimiento de escalas de evaluación en poblaciones especiales, falta de familiaridad con el uso de opioides y concepciones de evaluación subjetiva del dolor.

Abstract Background: Pain is a frequent reason for consultation. Poor vocational training is referred to as a critical component for proper treatment. The objective of this study was to describe the knowledge and practices of the nursing staff of the Pediatric Hospital, Pereira Rossell Hospital Center, regarding the assessment and approach of pain in children. Methods: Descriptive, cross-sectional study, anonymous survey on 1/12/2016. All the nurses present that day were included. Variables: age, gender, years of work, educational level. For the association of variables, Chi square test was used; a value of p < 0.05 was considered significant. Results: The survey was answered by 89.3% of the personnel present; median age 39 years (20-63), women 81%; median of years as pediatric nurse 10 years (1 month-38 years); maximum degree of training: auxiliary (73%). Acceptable level of global knowledge (61%); no significant association was found between knowledge and age, gender, years of work and educational level. Infant pain assessment scales less reported: neonates, children 1 to 3 years and children with cognitive disorder. Other deficits of knowledge detected: interval morphine interdosis, interpreting distraction of the child as absence of pain and considering the perception of the experienced health personnel as the most appropriate tool to measure pain. Conclusions: The surveys demonstrated acceptable knowledge about pain assessment and management. However, aspects to improve in the knowledge of scales of evaluation in special populations, lack of familiarity with the use of opioids and conceptions of subjective evaluation of pain were objectified.

Knowledge of nursing staff at a pediatric referral hospital regarding the assessment and management of pain in children.

Background: Pain is a frequent reason for consultation. Poor vocational training is referred to as a critical component for proper treatment. The objective of this study was to describe the knowledge and practices of the nursing staff of the Pediatric Hospital, Pereira Rossell Hospital Center, regarding the assessment and approach of pain in children. Methods: Descriptive, cross-sectional study, anonymous survey on 1/12/2016. All the nurses present that day were included. Variables: age, gender, years of work, educational level. For the association of variables, Chi square test was used; a value of p < 0.05 was considered significant. Results: The survey was answered by 89.3% of the personnel present; median age 39 years (20-63), women 81%; median of years as pediatric nurse 10 years (1 month-38 years); maximum degree of training: auxiliary (73%). Acceptable level of global knowledge (61%); no significant association was found between knowledge and age, gender, years of work and educational level. Infant pain assessment scales less reported: neonates, children 1 to 3 years and children with cognitive disorder. Other deficits of knowledge detected: interval morphine interdosis, interpreting distraction of the child as absence of pain and considering the perception of the experienced health personnel as the most appropriate tool to measure pain. Conclusions: The surveys demonstrated acceptable knowledge about pain assessment and management. However, aspects to improve in the knowledge of scales of evaluation in special populations, lack of familiarity with the use of opioids and conceptions of subjective evaluation of pain were objectified.

Introducción: El dolor es un motivo de consulta frecuente, por lo que la escasa formación profesional es referida como un componente crítico para su tratamiento adecuado. El objetivo de este estudio fue describir los conocimientos y prácticas del personal de enfermería del Hospital Pediátrico del Centro Hospitalario Pereira Rossell, con respecto a evaluación y abordaje del dolor en niños. Métodos: Se llevó a cabo un estudio descriptivo, transversal. Se aplicó una encuesta anónima el 1 de diciembre de 2016 en la que se incluyó a todos los enfermeros presentes ese día. Las variables que se consideraron fueron edad, sexo, años de trabajo, nivel formativo. Para la asociación de variables se utilizó la prueba de χ2. Se consideró un valor significativo p < 0.05. Resultados: La encuesta fue contestada por el 89.3% del personal presente: mediana de edad = 39 años (20-63), mujeres 81%; mediana de tiempo como enfermero pediátrico = 10 años (1 mes-38 años); grado máximo de formación: auxiliar (73%); nivel de conocimiento global: aceptable (61%). No se encontró asociación significativa entre conocimiento y edad, sexo, años de trabajo y nivel formativo. Las escalas de evaluación de dolor infantil menos reportadas: neonatos, niños de 1 a 3 años y niños con trastorno cognitivo; otros déficits de conocimientos detectados: intervalo interdosis de morfina, interpretar distracción del niño como ausencia de dolor, considerar la percepción del personal de salud experimentado como la herramienta más adecuada para medir el dolor. Conclusiones: Los enfermeros encuestados demostraron conocimientos aceptables sobre evaluación y abordaje del dolor. No obstante, se objetivaron aspectos a mejorar en el conocimiento de escalas de evaluación en poblaciones especiales, falta de familiaridad con el uso de opioides y concepciones de evaluación subjetiva del dolor.

Niños asistidos en la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell por lesiones de "causas externas". Años 2008-2016 / Children assisted at the Pediatric Palliative Care Unit of Pereira Rossell Hospital for injuries due to external causes. 2008-2016

Resumen: Introducción: las lesiones por "causas externas" son un problema de salud pública. En Uruguay, después del primer año, durante toda la infancia y adolescencia representan la primera causa de muerte. Entre ellas, los traumatismos encefalocraneanos (TEC) son la principal causa de muerte, lesiones graves y discapacidades. Objetivos: describir las características epidemiológicas y clínicas de los niños asistidos en la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (UCPP-CHPR), como consecuencia de lesiones por "causas externas". Metodología: estudio descriptivo, retrospectivo. Se incluyeron los niños menores de 18 años asistidos por la UCPP- CHPR, entre 1/10/2008-30/11/2016. Resultados: en el período estudiado se asistieron 5,4% (38/703) niños como consecuencia de lesiones por "causas externas". Mediana de edad: 4 años 11 meses (rango: 3 meses - 15 años); sexo masculino (23/38). Entre las "causas externas" que condicionaron ser pasibles de CP, lo más frecuente fueron los siniestros de tránsito (17/38), seguidos por maltrato infantil (11/38). La mayoría presentaron TEC grave (27/38). Al egreso hospitalario permanecían con: secuela neurológica motora (33/38); trastorno severo del lenguaje (19/38). Utilizaron en algún momento prótesis y/o dispositivos de tecnología médica (36/38); más de una (26/36). Se registraron siete fallecimientos. Conclusiones: de los niños asistidos por la UCPP-CHPR, 5% lo fue como consecuencia de lesiones por "causas externas", en su mayoría evitables. Estos determinaron importantes secuelas permanentes, discapacidad y dependencia que requieren cuidados complejos en la hospitalización y al egreso y una mirada y atención transdisciplinaria e interinstitucional de calidad.

Summary: Introduction: injuries due to "external causes" are a public health problem. In Uruguay they are the leading cause of death throughout childhood and adolescence, after the first year of life. Traumatic brain injury (TBI), among others, is the leading cause of death, serious injury and disability. Objectives: to describe the epidemiological and clinical features of children assisted at the Pediatric Palliative Care Unit of the Pereira Rossell Hospital Center (UCPP-CHPR), as a consequence of injuries due to "external causes". Method: descriptive, retrospective study. Children under 18 years old who were assisted at UCPP-CHPR between 1/10/2008 and 11/30/2016 were included in the study. Results: in the period studied, 5.4% (38/703) children were seen as a result of "external causes" injuries. Median age: 4 years, 11 months (range: 3 months - 15 years); Male: 23/38. Among the "external causes" that resulted in the patient's need of pediatric palliative care, the following were the most frequent: traffic accidents (17/38), battered child (11/38). Most patients in the study evidenced severe TBI (27/38). Upon hospital discharge they still presented: motor neurological sequela (33/38); severe language disorder (19/38). 36/38 of them used prosthesis and/ or medical technology devices at some point (36/38); 26/36 of them needing more than one. Seven deaths were recorded. Conclusions: five percent of the children assisted at the UCPP-CHPR were seen as a consequence of injuries due to "external causes", most of which are avoidable. These determined important permanent sequelae, disability and dependence that required complex care during hospitalization and after discharge, as well as a transdisciplinary and interinstitutional approach and quality care.

Directivas de adecuación del esfuerzo terapéutico en niños: experiencia de la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell (2009-2015) / Directives on the adequacy of therapeutic effort in children: experience at the Peadiatric Palliative Care Unit of the Pereira Rossell Hospital Centre (2009-2015)

Introducción: en algunos pacientes las directivas de adecuación del esfuerzo terapéutico (DAET) constituyen una herramienta para alinear el cuidado médico a los objetivos del paciente y su familia. Objetivo: describir las características de los niños asistidos por una unidad de cuidados paliativos pediátricos (UCPP) con DAET y el nivel de respeto de las mismas en los niños fallecidos. Material y método: estudio descriptivo, retrospectivo. Período: 1/1/2009-31/12/2015. Población: niños asistidos por la UCPP. Variables, de los niños con DAET: edad, patología, participantes en la toma de decisiones, forma de registro, medidas a realizar y no realizar, tiempo entre captación por UCPP/DAET, fallecimiento, tiempo entre DAET/fallecimiento, lugar de fallecimiento, respeto de las DAET. Resultados: tenían DAET 11,8% (73/618) de los pacientes; mediana edad: 3,8 años; 75,3% presentaba afectación neurológica severa. Participantes en el proceso de DAET: equipo de salud y cuidador principal: 94,5%. Registro en documento específico: 60,3%. Las DAET incluyeron realizar: analgesia y cuidados de confort: 100%, ingreso a cuidados moderados: 86,3% y no realizar: reanimación cardiopulmonar: 100%, ingreso a terapia intensiva: 86,3%, asistencia ventilatoria mecánica 83,5%. Tiempo entre captación UCPP/DAET: mediana: 13 meses. Falleció 53,4% (39/73), en el hospital 76,9%. Tiempo entre DAET/fallecimiento, mediana: 7 meses. Se respetaron las DAET en 97,4%. Discusión y conclusiones: de los niños asistidos por la UCPP, 11,8% tenía DAET. En su mayoría el proceso fue compartido entre profesionales y cuidadores. Se constató un aumento progresivo de DAET en documentos de registro específico. En casi la totalidad de los niños fallecidos se respetó las DAET.

Introduction: in certain patients, "directives on the adequacy of therapeutic effort" (DAET) known as advanced care planning are important tools to align medical care to patient's and family's objectives of care. Purpose: to describe characteristics of patients assisted by a paediatric palliative care unit (PPCU) with DAET and the degree in which they were respected in children who died. Methods: descriptive, retrospective study. Period: 1/January/2009- 31/December/2015. Population: children assisted by the UCPP with DAET. Variables: age, pathology, prosthesis carried, primary caregiver, participants in decision-making process, form of registration, measures "TO PERFORM" and "NOT TO PERFORM", time between recruitment by PPCU/DAET, death, time between DAET/death, place of death, DAET accomplished. Results: DAET was found in 11.8% (73/618) of patients; median age: 3.8 years old; 75.3% had severe neurological impairment; 84.9% carried at least one prosthesis; primary caregiver: mother 72.6%. Participants in decision-making process: healthcare team and primary caregiver 94.5%. Registration in specific document: 60.3%. DAET included: "TO PERFORM": analgesia and comfort care: 100%, admission to moderate care: 86.3% and "NOT TO PERFORM": cardiopulmonary resuscitation: 100%, admission to intensive care: 86.3%, mechanical ventilator assistance 83.5%. Time between recruitment by PPCU/DAET: median: 13 months. 53.4% (39/73) died, in the hospital 76.9%. Time between DAET/death, median: 7 months. DAET were followed in 97.4%. Discussion and conclusions: 11.8% of children assisted by PPCU had DAET. Decision-making was shared between health providers and caregivers in most cases. DAET were respected in almost all children who had them and died.

Introdução: para alguns pacientes as diretivas de adequação do esforço terapêutico (DAET) são uma ferramenta para compatibilizar a atenção médica e os objetivos do paciente de sua família. Objetivo: descrever as características das crianças atendidas por uma unidade de cuidados paliativos pediátricos (UCPP) com DAET e o nível de respeito das mesmas nas crianças que faleceram. Material y método: estudo descritivo, retrospectivo. Período: 1/1/2009-31/12/2015. População: crianças atendidas pela UCPP. Variáveis: das crianças com DAET: idade, patologia, participantes na toma de decisões, forma de registro, medidas a realizar e a não realizar, tempo entre captação por UCPP/DAET, falecimento, tempo entre DAET/falecimento, lugar de falecimento, respeito as DAET. Resultados: 11,8% (73/618) dos pacientes tinham DAET; a mediana de idade foi: 3,8 anos; 75,3% apresentava afetação neurológica severa. Participantes do processo de DAET: em 94,5% dos casos - equipe de saúde e cuidador principal. Registro en documento específico: 60,3%. As DAET incluíam a realização de: analgesia e cuidados de conforto: 100%, admissão a cuidados moderados: 86,3% e a não realização de: reanimação cardiopulmonar: 100%, admissão a terapia intensiva: 86,3%, assistência ventilatoria mecânica 83,5%. Tempo entre captação UCPP/DAET: mediana: 13 meses. 53,4% (39/73) faleceu sendo 76,9% no hospital. Tempo entre DAET/falecimento, mediana: 7 meses. As DAET foram respeitadas em 97,4%. Discussão e conclusões: 11,8% das crianças atendidas pela UCPP tinha DAET. Na maioria dos casos o processo foi compartilhado entre profissionais e cuidadores. Um aumento progressivo de DAET nos documentos de registro específico foi observado. AS DAET foram respeitadas em praticamente todos os casos.

Conocimientos relativos al abordaje del dolor en niños: Encuesta a posgrados y residentes / Knowledge related to pain management in children: Survey to postgraduate students and residents

Introducción: el dolor es un problema de salud pública en todas las edades. Los niños tienen más riesgo de ser insuficientemente tratados. Una encuesta a médicos residentes del Hospital Maciel reportaba que 75% no conocía la escalera analgésica de la Organización Mundial de la Salud (OMS) y 67% no prescribía morfina habitualmente cuando estaba indicada. Objetivo: describir el grado de conocimiento de médicos posgrados y residentes que asisten niños respecto a los principios de la OMS para tratamiento del dolor y sus prácticas enunciadas de prescripción analgésica. Metodología: estudio descriptivo, transversal, encuesta anónima. Resultados: respondieron 131 médicos. Refirieron asistir niños con dolor: 98%; frecuentemente: 43%. Relataron conocer la escalera analgésica de la OMS: 70%. Identificaron correctamente fármacos del primer escalón: 76%, del segundo: 4%. Respecto a morfina: nunca la prescribió: 61%; la razón más frecuente para no hacerlo: 'no necesitar usarlo' 49%; refirieron correctamente: que no tiene dosis máxima: 48%, y el intervalo de administración correcto: 44%. Reportaron: 2 fármacos coadyuvantes: 28%, y haber leído 1 artículo relativo a dolor en los últimos 3 años: 39%. Conclusiones: se detectaron deficiencias en: el reconocimiento de fármacos para el tratamiento de dolor severo; fármacos coadyuvantes; propiedades farmacológicas y farmacocinéticas de morfina. Más de la mitad de los médicos encuestados nunca prescribió morfina. Se constató escasa lectura referente a este frecuente problema de salud.

Introduction: pain is a public health problem at all ages. Children are at particular risk of receiving insufficient treatment. A survey to resident doctors at Maciel Hospital showed that 75% of them did not know the analgesic ladder from the World Health Organization (WHO) and 67% did not prescribe morphine when indicated. Objective: to describe the level of knowledge of postgraduate and resident doctors who care for children, considering the WHO principles for pain treatment and their expressed analgesic prescription practice. Methodology: A descriptive, transversal and anonymous survey was performed. Results: 131 doctors answered the survey; 98% declared they treat children in pain, 43% do it frequently; 70% stated that they knew the WHO analgesic ladder; 76% correctly identified drugs belonging to the first step and 4% the ones of the second. Regarding morphine: 61% never prescribed it, the most frequent reason for not doing it was: 'it was not necessary': 49%; correctly reported not having a maximum dose: 48%; expressed correct interval dose: 44%; reported 2 adjuvant drugs: 28%; having read one article related to pain in the last 3 years: 39%. Conclusions: deficits in the following areas were found: lack of knowledge of drugs to treat severe pain; adjuvant drugs; morphine pharmacological and pharmacokinetic properties, more than half of the interviewees never prescribed morphine. Limited reading regarding this frequent health problem was found.

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.

Evaluación de dolor en niños hospitalizados en servicios de salud públicos y privados de Uruguay / Pain assessment in children hospitalized in public and private health institutions in Uruguay

El dolor es un problema de salud frecuentemente no reconocido e ignorado en pediatría.. Objetivo::reportar la prevalencia de dolor en niños hospitalizados: las 24 horas previas y en el momento de la entrevista. De los pacientes con dolor actual describir: intensidad y tratamiento indicado.. Metodología::estudio transversal, el 6/12/13 en el Centro Hospitalario Pereira Rossell (CHPR) y el 20/1/14 en otras instituciones del país. Se incluyeron los menores de 15 años hospitalizados. Se consideró paciente con dolor cuando el niño o su cuidador referían haberlo experimentado en las 24 horas previas y/o en el momento de la entrevista. Variables: edad, sexo, motivo de ingreso, trastorno cognitivo, tratamiento analgésico indicado, vía e intervalo de administración, tratamiento adyuvante y medidas no farmacológicas. La intensidad se evaluó mediante escalas.. Resultados::se encontraron: 168 niños hospitalizados, 109 en el CHPR; prevalencia de: dolor en las 24 horas previas: 35% (59/168) y en el momento de la encuesta: 15,5% (26/168). De los niños con dolor actual la intensidad era: leve 8/26, moderado 14/26 y severo 4/26. No tenían indicación de fármacos analgésicos: 9/26. El analgésico más indicado fue dipirona (11/17) y la asociación más prescripta: dipirona-ketoprofeno (5/17). Se constató: indicación de intervalo no adecuado: 7/17; vía intravenosa: 12/17; tratamiento adyuvante y medidas no farmacológicas: 1 cada uno.. Conclusiones::se constataron niños hospitalizados con dolor y déficits diversos en los tratamientos indicados. Es necesario que las instituciones sanitarias aborden este problema como parte de su política institucional.

Pain is a health problem often unrecognized and ignored in pediatrics. Objective: to report the prevalence of pain in hospitalized children: 24 hours before and during the interview. To describe intensity and prescribed treatment in patients with current pain. Methods: transversal study, on 06/12/13 at Pereira Rossell Hospital Center (PRHC) and on 20/1/14 in other institutions. Hospitalized children under 15 years old were included. “Patient in pain” was considered when the child or caregiver reported pain experienced in the previous 24 hours and/or at the time of the interview. Variables: age, gender, reason for admission, cognitive disorder, analgesic treatment indicated, route of administration, dosing interval, adjuvant and non-pharmacological treatments. Validated scales were used to assess intensity. Results: 168 hospitalized children, 109 at PRHC; prevalence of pain in the previous 24 hours: 35% (59/168) and during the interview: 15.5% (26/168). Intensity of pain found in children with current pain was: 8/26 mild, 14/26 moderate and 4/26 severe; 9/26 did not have any analgesic prescription. The most prescribed analgesic was: dipirone (11/17) and most prescribed association was: dipirone-ketoprofen (5/17). Interdose interval was inappropriate in 7/17; intravenous route of administration was indicated in 12/17; adjuvant and non-pharmacological treatments were found in one patient each. Conclusions: hospitalized children in pain and several problems in analgesic treatment prescription were found. Institutional policies directed to address this problem in management are needed.

Limitación/adecuación del esfuerzo terapéutico en pediatría / Limitation/adequacy of therapeutic effort in pediatrics

En niños con condiciones de salud que amenazan sus vidas, el trayecto de la enfermedad puede llevar, en ocasiones, a que los profesionales de la salud y las familias se pregunten si continuar los tratamientos representa la mejor opción para el niño. A veces, limitar o suspender las medidas de soporte vital resulta más apropiado, especialmente si el tratamiento sólo preserva la existencia biológica o si el objetivo global del cuidado ha cambiado a “solamente mantener el confort”. Se presenta el caso de un niño portador de encefalopatía crónica en etapa terminal, en el cual se implementaron medidas de adecuación del esfuerzo terapéutico con el objetivo de permitir una muerte digna. Se describe el proceso de toma de decisiones conjunta con los padres, la forma de registro médico y las principales medidas de cuidado al final de la vida.

Sometimes, the disease trajectory in children with life threatening conditions can lead health professionals and families to wonder whether continuing treatment is the best option for the child. Occasionally, limiting or discontinuing life support measures is advisable, especially if treatment only preserves biological existence or the overall goal of care has shifted to just “maintaining comfort”. The study presents the case of a child with chronic encephalopathy in terminal stadium, for whom measures of therapeutic adequacy were implemented with the aim of allowing a quite death. The shared decision-making process, the medical record document and the main measures of care at end of life are described.

Niños egresados del Hospital Británico con condiciones de salud pasibles de Cuidados Paliativos. Estudio epidemiológico. Año 2012 / Children discharged from the British Hospital under health conditions that allow for palliative care. Epidemiological study. 2012

Introducción: según el Ministerio de Salud Pública, en el año 2011 en Uruguay sólo 3% de los niños con condiciones de salud pasibles de cuidados paliativos (CP) tuvieron acceso a ellos. Objetivo: conocer la prevalencia y principales características clínicas de niños egresados del Hospital Británico (HB) con condiciones de salud pasibles de CP. Metodología: estudio descriptivo, observacional, retrospectivo, del 1 de enero al 31 de diciembre de 2012. Se consideraron como condición “pasible de CP” a menores de 15 años con enfermedad que amenazaba su vida, incluidas en la clasificación de la Association For Children With Life Threatening Conditions; “posiblemente pasibles de CP” a neonatos con: prematurez severa, depresión neonatal severa, o posreanimados, sin secuelas neurológicas al alta. Resultados: de los niños egresados del HB, 3,3% (53/1447) eran “pasibles o posiblemente pasibles de CP”. Egresaron de sala de pediatría 36% (19/53); terapia intensiva 64% (34/53). Mediana de edad: 3,6 años (rango 1 día-14 años). Reingresaron al menos una vez 90,5% (48/53). Egresaron con prótesis 21% (11/53). Fallecieron durante el período de estudio 7,5% de los niños (4/53). Conclusiones: del HB, al igual que de otros prestadores, egresan niños con condiciones de salud pasibles de CP. Éstos frecuentemente son portadores de prótesis, tienen múltiples reingresos y una mortalidad superior a la de otros sectores de atención pediátrica de la institución. Es necesario que los profesionales de los distintos escenarios donde se asisten estén capacitados para brindarles, a ellos y sus familias, una atención apropiada, humana y digna en todas las etapas de la vida, incluida la muerte.

Introduction: according to the Ministry of Public Health, In 2011 only 3% of children in need of palliative care (PC) had access to it in Uruguay. Objective: to determine the prevalence and main clinical features of children discharged from the British Hospital (BH) in need of PC. Methodology: descriptive, observational, retrospective study conducted from 1/1 to 31/12/2012. The study considered the following condition: "eligible for PC" children younger than 15 years with life-threatening conditions, included in the "Association for Children with life threatening conditions" classification; "possibly eligible for PC" neonates with severe prematurity, neonatal severe depression or post resuscitated neonates without neurologic sequelae at discharge. Results: of all children discharged from the British Hospital, 3.3% (53/1447) were "eligible or possibly eligible for PC". They were discharged from: pediatric ward 36% (19/53); intensive care unit 64% (34/53). Median age: 3.6 years (range 1 day-14 years). Ninety point five per cent (48/53). of them were readmitted at least once. Upon discharge, 21% (11/53) had prosthesis. During the study period 7.5% of children (4/53) died. Conclusions: children in need of PC are discharged from the British Hosp ital, as well as from other healthcare centers. They often have prosthesis, are subject to multiple readmissions and mortality is higher than that in other pediatric units of the institution. It is necessary for professionals in the different scenarios where these children are seen to be able to provide them and their families with appropriate, humane and dignified care at all stages of life, including death.