Palliative care for children with central nervous system tumors: results of a Spanish multicenter study

Background Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objectives (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Methods Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Results 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2–9) and median age at death was 7 years (IQR 4–11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0–5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p = .01). Conclusion Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death (AU)

Palliative care for children with central nervous system tumors: results of a Spanish multicenter study.

BACKGROUND: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. OBJECTIVES: (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). METHODS: Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. RESULTS: 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p = .01). CONCLUSION: Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.

Implicaciones clínicas de la retirada de alimentación e hidratación artificial en pacientes pediátricos en el final de vida / Clinical implications of artificial nutrition and hydration withdrawal in children at the end of life

Introducción: En la literatura de pacientes adultos, hay evidencia de que el mantenimiento de alimentación e hidratación artificial (ANH) en el final de vida se asocia a numerosos efectos adversos. La retirada de ANH podría asociarse a una disminución de estos, sin suponer disminución de supervivencia. En pediatría, hay gran falta de evidencia en estos aspectos. El objetivo de este estudio es describir el uso de ANH en pacientes pediátricos en final de vida, y las implicaciones clínicas derivadas de su mantenimiento o retirada. Metodología: Estudio observacional (prospectivo y retrospectivo) en un hospital pediátrico de tercer nivel. Se incluyeron pacientes de más de 24 h de vida que fallecieron en nuestro centro o en domicilio entre el 15 de julio de 2019 y el 15 de julio de 2020. La información fue recogida mediante entrevistas al equipo sanitario y la revisión de historias clínicas. Resultados: De los pacientes que recibían ANH, en la mitad de los casos esta se redujo o se retiró antes del fallecimiento. La retirada/reducción fue más frecuente en los pacientes que fallecieron en hospital versus domicilio. Se demostró una incidencia mayor de signos de deshidratación en los grupos que no recibieron ANH. Comparando los grupos que sí recibían ANH, se observó un leve aumento de signos en el grupo donde se retiró ANH con respecto al grupo en el que se mantuvo, sin ser significativo. La mediana de tiempo transcurrido entre retirada de ANH y fallecimiento fue de un día. Conclusiones: La reducción o retirada de ANH en pacientes pediátricos en el final de vida no parece suponer un aumento de signos de deshidratación. (AU)

Introduction: In the literature on adult patients, there is evidence that continuing artificial nutrition and hydration (ANH) during end of life is associated with numerous adverse effects. The withdrawal of ANH could lead to a reduction in these negative effects, without resulting in a reduced survival time. In pediatrics, evidence regarding this subject is sorely lacking. The objective of this study is to describe the use of ANH in pediatric patients at end of life, along with the clinical implications of continuing or withdrawing it. Methodology: Observational (prospective and retrospective) study in a tertiary pediatric hospital. Patients older than 24 hours who died at our center or at home between 07/15/2019 and 07/15/2020 were included. The information was collected via interviews with the healthcare team and by reviewing clinical records. Results: Of the patients who received ANH, in half of them this support was reduced or withdrawn prior to death. ANH was withdrawn/reduced in a higher percentage in patients who died in the hospital versus at home. A greater incidence of clinical signs of dehydration was seen in the groups that did not receive ANH. When compared with the groups that did receive ANH, a slight increase in these signs was observed for the group in which ANH was withdrawn versus that in which it was continued, without this difference being statistically significant. The median time elapsed between withdrawing ANH and death was one day. Conclusions: The reduction or withdrawal of ANH in pediatric patients does not appear to increase signs of dehydration. (AU)

Situación actual y retos de los pediatras españoles en el manejo del dolor infantil / Challenges and current status of children pain management in Spain

El dolor en Pediatría es un síntoma con frecuencia infradiagnosticado y deficientemente tratado a pesar de su prevalencia, siendo el déficit de conocimientos de los pediatras una de las barreras para garantizar un manejo eficaz. El presente trabajo describe el escenario actual y los retos en el abordaje diagnóstico y terapéutico del dolor infantil por pediatras en nuestro medio. Los resultados se obtienen de un estudio transversal descriptivo que se realiza entre octubre de 2021 y marzo de 2022 mediante encuesta de difusión a pediatras españoles diseñada por el Grupo Español para el Estudio de Dolor Pediátrico. Se pone el foco especialmente en las oportunidades de formación en diferentes aspectos del dolor pediátrico. (AU)

Pain in children population is prevalent, but its proper diagnosis and management are frequently insufficient in pediatrics daily practice. Lack of knowledge of the professionals in charge is a recognized barrier to ensure an appropiate approach to pain in this population. Our present study reflects the current status of pain management and the challenges in diagnosis and treatment that pediatricians face in their daily work. This information is obtained from a survey made with a voluntary questionaire, desinged and distributed online by Grupo Español para el Estudio del Dolor Pediátrico to pediatricians in Spain from October 2021 to March 2022. The final objective of the questionaire was to shed some light into the problem and find out which areas of pain management knowledge are in need of improvement. (AU)

Challenges and current status of children pain management in Spain.

Pain in children population is prevalent, but its proper diagnosis and management are frequently insufficient in pediatrics daily practice. Lack of knowledge of the professionals in charge is a recognized barrier to ensure an appropiate approach to pain in this population. Our present study reflects the current status of pain management and the challenges in diagnosis and treatment that pediatricians face in their daily work. This information is obtained from a survey made with a voluntary questionaire, desinged and distributed online by "Grupo Español para el Estudio del Dolor Pediátrico (GEEDP)" to pediatricians in Spain from october 2021 to march 2022. The final objective of the questionaire was to shed some light into the problem and find out which areas of pain management knowledge are in need of improvent.

End of life in patients under the care of paediatric palliative care teams. Multicentre observational study.

INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

El final de vida en pacientes atendidos por equipos de cuidados paliativos pediátricos. Estudio observacional multicéntrico / End of life in patients under the care of paediatric palliative care teams. Multicentre observational study

Introducción:Cada año fallecen en España alrededor de 2000 niños y adolescentes; sin embargo, conocemos poco las particularidades que envuelven a la muerte en pediatría. El objetivo de este estudio es documentar las características de los pacientes que fallecen a cargo de los equipos de cuidados paliativos pediátricos en España. Pacientes y métodos:Estudio retrospectivo, descriptivo y multicéntrico. Participaron 14 equipos de todo el territorio nacional.Resultados:Se obtuvieron datos de 164 pacientes. En la mayoría la enfermedad de base eran procesos oncológicos, neurológicos y neuromusculares. La mediana de edad al fallecimiento fue de 6,9 años (RIC: 11,2). La mediana de tiempo de seguimiento por el equipo fue de 0,3 años (RIC: 0,8 años). Los síntomas más frecuentes en la última semana de vida fueron disnea, dolor, aumento de secreciones y trastornos del sueño. El número de fármacos que se administraban a cada paciente una semana previa al fallecimiento tuvo una mediana de 6 (RIC: 4). El lugar de fallecimiento de 95 de los pacientes (57,9%) fue el hospital y de 67 (40,9%) fue su domicilio.Conclusiones:Los pacientes presentaban un amplio rango de edad y una exposición sustancial a la polifarmacia. El tiempo de seguimiento nos muestra el acceso tardío a los programas de cuidados paliativos, deberíamos hacer un esfuerzo para la introducción temprana de estos cuidados y que no quede relegada al final de vida. En España existe una distribución desigual de recursos, sin que todos los equipos tengan la posibilidad de atención domiciliaria, por lo que el lugar de fallecimiento debemos interpretarlo con cautela. (AU)

Introduction:Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.Patients and methods:Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated.Results:Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home.Conclusions:There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution. (AU)

[End of life in patients under the care of paediatric palliative care teams. Multicentre observational study]. / El final de vida en pacientes atendidos por equipos de cuidados paliativos pediátricos. Estudio observacional multicéntrico.

INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

Ni vamos a por todas ni tiramos la toalla / We don't go all out, we don't throw in the towel

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Cures pal·liatives pediàtriques en un cas de malaltia neurològica greu / Atención paliativa en un caso de enfermedad neurológica grave / Pediatric palliative care in a case of severe neurodegenerative disease

INTRODUCCIÓ: Els pacients amb malalties neurològiques greus representen un dels principals grups d'atenció a les unitats de cures pal·liatives pediàtriques (CPP). Tot I que les etiologies són heterogènies, comparteixen trets fonamentals que cal tenir en compte en la valoració des dels diversos nivells assistencials. CAS CLÍNIC: Presentem el cas d'un pacient de 9 anys amb una malaltia neurològica degenerativa no filiada, derivat a la unitat de CPP després de necessitar diversos ingressos per sobreinfeccions respiratòries. Des de la unitat es fa una valoració multidisciplinària en què es consideren els símptomes habituals en fase avançada I s'estableix un pla terapèutic juntament amb els professionals vinculats. Posteriorment es manté el seguiment atenent a les complicacions presentades, fins al maneig durant la situació d'últims dies, amb la defunció del pacient al seu domicili sis mesos més tard. COMENTARIS: Tenint en compte l'encara curt trajecte de les unitats de CPP I la complexitat dels casos que les necessi-ten, és freqüent trobar interrogants en diferents fases de l'atenció. És important conèixer les eines adequades per valorar el millor moment per fer la derivació I comprendre les necessitats adaptades a cada estadi evolutiu, així com detectar símptomes que sovint condicionen la qualitat de vida. Finalment cal fer un acompanyament del pacient I la família, amb el maneig adequat durant la situació de final de vida

INTRODUCCIÓN: Los pacientes con enfermedades neurológicas graves suponen uno de los principales grupos de atención en las unidades de cuidados paliativos pediátricos (CPP). Pese a la diversidad en cuanto a etiologías, comparten particularidades que es necesario tener en cuenta durante su valoración en los distintos niveles asistenciales. CASO CLÍNICO: Presentamos el caso de un paciente de 9 años con una enfermedad neurológica degenerativa no filiada, derivado a la unidad de CPP tras requerir varios ingresos por sobre infecciones respiratorias. Desde la unidad se realiza una valoración multidisciplinar, considerando los síntomas más frecuentes en fase avanzada y estableciendo un plan terapéutico juntamente con los profesionales vinculados. Posteriormente se mantiene el seguimiento atendiendo a las complicaciones presentadas, así como el manejo durante la situación de últimos días hasta la defunción del paciente en su domicilio seis meses más tarde. COMENTARIOS: Dado el corto trayecto de las unidades de CPP y la complejidad de los casos que atienden, es habitual encontrarse con interrogantes en distintas fases de la atención. Es importante conocer las herramientas adecuadas para valorar el mejor momento para la derivación, comprendiendo las necesidades adaptadas a cada fase evolutiva, así como detectar síntomas que suelen comprometer la calidad de vida. Finalmente se deberá realizar un acompañamiento del paciente y la familia, con el manejo adecuado de la situación de final de vida

INTRODUCTION: Patients with severe neurological disease are one of the main groups followed by paediatric palliative care (PPC) units. Despite the diversity in aetiologies, they share particularities that need to be considered during their assessment at different levels of care. CASE REPORT: We present the case of a 9-year-old patient with an unknown neurodegenerative disease who was referred to the PPC unit after multiple respiratory infections. Once in the unit, the PPC team carried out a multidisciplinary evaluation, considering the most frequent symptoms at the advanced stage of the disease, and establishing a therapeutic plan together with the required professionals. Subsequent follow-up was maintained according to the severity of the complications during 6 months, until end-of-life care was required, with death of the patient at home. COMMENTS: Given the relatively short path of the PPC units, and the complexity of the cases requiring them, it is common to encounter unclear questions about patient management. It is important to have the right tools to decide their referral, to understand their needs in every stage of the disease, as well as detecting symptoms that usually compromise their quality of life. Finally, it is essential to accompany the patients and their families and provide proper management through this end-of-life journey

Documento de posicionamiento del Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) de la Asociación Española de Pediatría sobre el registro del dolor como quinta constante / Position document of the spanish association of paediatrics group for the study of paediatric pain on the recording of pain as fifth vital sign

El Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) se forma en 2017 con el objetivo de ayudar a reducir o eliminar el dolor de los neonatos, lactantes, niños y adolescentes. Ante un mismo diagnóstico de dolor, los pacientes pueden padecer dolores agudos, crónicos, por procedimientos, postoperatorio, nociceptivos, neuropáticos o mixtos. Sin una adecuada valoración clínica basada en la edad, la enfermedad de base y el tipo de dolor sospechado, este sufrimiento pasa desapercibido con demasiada frecuencia y como consecuencia es infratratado y poco prevenido. La prevalencia del dolor agudo en Pediatría es difícil de estimar y según la evidencia científica actual, podemos determinar que varía entre un 22% (dolor por procedimientos) y un 77% (dolor en los pacientes de urgencias y en las plantas de hospitalización); con relación al dolor crónico, hasta un 30% de los niños pueden padecerlo en algún momento de su vida. Entre las barreras detectadas en el diagnóstico de dolor se encuentran: la dificultad para su valoración por falta de unidad en su registro, existencia de diversas escalas de valoración (según edad y tipo de dolor) y por la ausencia de formación en manejo e interpretación de estas. A esto se puede sumar, en según qué ámbitos sanitarios, la elevada presión asistencial y las dificultades de comunicación entre profesionales y entre estos con las familias. Desde nuestro grupo de trabajo de la AEP deseamos manifestar nuestro claro posicionamiento en la recomendación de la valoración y registro del dolor de forma sistemática en todos los niños atendidos en el sistema sanitario, considerando así el dolor como la quinta constante a determinar después de las constantes vitales

The Spanish Group for Children's Pain Study was created in 2017 in an aim to prevent, remove or reduce pain in neonates, infants, children, and adolescents. Along with a diagnosis of pain, a paediatric patient may suffer from acute or chronic pain, neuropathic, nociceptive, or mixed pain, as well as pain from procedures, and post-surgical pain. Pain suffering is too often ignored and not diagnosed. As a result of this, pain prevention and pain treatment fails. Acute pain prevalence in scientific literature is estimated to be between 22% (procedures pain) and 77% (pain on patients in emergency departments and in hospital wards). Furthermore, up to 30% of children could suffer from chronic pain during their childhood. Among the barriers detected in pain management are: difficult assesment caused by a lack of unity in pain registry, difficuties due to the choice of an assessment pain scale (according to age and type of pain), and the absence of training in the management and interpretation of these pain scales. Additionally, in some health areas there is a high workload pressure and generally there are communication difficulties between professionals, and between them and families. From this AEP working group our clear positioning is expressed in the recommendation of the systematic assessment and recording of pain in all children treated in the health system, thus considering pain as the fifth constant to be determined after the other vital signs

[Position document of the spanish association of paediatrics group for the study of paediatric pain on the recording of pain as fifth vital sign]. / Documento de posicionamiento del Grupo Español para el Estudio del Dolor Pediátrico (GEEDP) de la Asociación Española de Pediatría sobre el registro del dolor como quinta constante.

The Spanish Group for Children's Pain Study was created in 2017 in an aim to prevent, remove or reduce pain in neonates, infants, children, and adolescents. Along with a diagnosis of pain, a paediatric patient may suffer from acute or chronic pain, neuropathic, nociceptive, or mixed pain, as well as pain from procedures, and post-surgical pain. Pain suffering is too often ignored and not diagnosed. As a result of this, pain prevention and pain treatment fails. Acute pain prevalence in scientific literature is estimated to be between 22% (procedures pain) and 77% (pain on patients in emergency departments and in hospital wards). Furthermore, up to 30% of children could suffer from chronic pain during their childhood. Among the barriers detected in pain management are: difficult assesment caused by a lack of unity in pain registry, difficuties due to the choice of an assessment pain scale (according to age and type of pain), and the absence of training in the management and interpretation of these pain scales. Additionally, in some health areas there is a high workload pressure and generally there are communication difficulties between professionals, and between them and families. From this AEP working group our clear positioning is expressed in the recommendation of the systematic assessment and recording of pain in all children treated in the health system, thus considering pain as the fifth constant to be determined after the other vital signs.

Assistència als infants amb malalties avançades o al final de la vida / Necesidades de la pediatría de atención primaria en la atención a los niños con enfermedades avanzadas o al final de la vida / Needs in primary pediatric care for the management of children with advanced diseases or in the end of life

Fonament: En l'atenció dels infants al final de la vida, cal fer un abordatge interdisciplinari i coordinat que inclogui l'assistència hospitalària i l'atenció primària del territori. Objectiu: Conèixer les necessitats actuals dels professionals de la pediatria d'atenció primària en l'assistència dels infants amb malalties avançades o al final de la vida. Mètode: Estudi descriptiu mitjançant una enquesta distribuïda en línia mitjançant la base de dades de la Societat Catalana de Pediatria al personal de pediatria d'atenció primària. Resultats: Han contestat 112 professionals. El 66,1% ha atès els últims deu anys entre un i cinc pacients que han mort com a conseqüència d'una malaltia incurable. El 68,3% ha estat poques vegades o mai el principal responsable de l'atenció d'aquests infants. El 98,2% fomentaria la mort al domicili. El 54,5% no fa visites domiciliàries. Al 52,3% el preocupa més la part legal i ètica que la clínica pel que fa a l'atenció d'aquests infants. El 47,7% desconeix si pot administrar o receptar opioides. El 97,3% considera que el pediatre de primària ha de tenir un paper rellevant en l'atenció d'aquests infants tot i la nul·la o bàsica formació del 86,6%. El 96,3% voldria formarse més i millor en les cures pal·liatives pediàtriques. Conclusions: La pediatria del territori demana un paper important en l'atenció al final de la vida, i sol·licita més formació i coordinació entre els diferents nivells assistencials

Fundamento: En la atención de los niños al final de la vida es necesario un abordaje interdisciplinar y coordinado que incluya la asistencia hospitalaria y la atención primaria del territorio. Objetivo: Conocer las necesidades actuales de los profesionales de pediatría de atención primaria en la asistencia de los niños con enfermedades avanzadas o al final de la vida. Método: Estudio descriptivo mediante encuesta online distribuida a través de la base de datos de la Sociedad Catalana de Pediatría al personal de pediatría de atención primaria. Resultados: Contestaron 112 profesionales. El 66,1% ha atendido en los últimos diez años entre uno y cinco pacientes que han muerto como consecuencia de una enfermedad incurable. El 68,3% ha sido rara vez o nunca el principal responsable de la atención de estos niños. El 98,2% fomentaría la muerte en el domicilio. El 54,5% no realiza visitas domiciliarias. Al 52,3% le preocupa más la parte legal y ética que la clínica en la atención de estos niños. El 47,7% desconoce si puede administrar o recetar opioides. El 97,3% considera que el pediatra de primaria debe tener un papel relevante en la atención de estos niños, a pesar de la nula o básica formación del 86,6%. El 96,3% quisiera formarse más y mejor en los cuidados paliativos pediátricos. Conclusiones: La pediatría del territorio demanda un papel importante en la atención al final de la vida y solicita más formación y coordinación entre los diferentes niveles asistenciales

Background: A coordinated interdisciplinary approach including hospital and primary care is critical for the care of children at the end of their lives. Objective: To conduct a needs assessment for the management of children with advanced diseases or in the end of life among primary pediatric care providers. Method: Descriptive study using an online survey distributed to primary care providers registered in the Catalan Society of Pediatrics database. Results: One hundred and twelve providers responded to the survey. In the last ten years, 66.1% have provided care to one to five paitients who died as a result of an incurable disease. Sixty-eight point three per cent have rarely or never been the main responsible provider for the care of these children. Ninety-eight point two per cent would encourage death at home. Fifty-four point five per cent don't perform home visits. Fifty-two point three per cent are more concerned about the legal / ethical considerations than the medical management in the care of these children. Forty-seven point seven per cent do not know if they can administer or prescribe opioids. Ninety-seven point three per cent considered that the primary care pediatrician should have a relevant role in the care of these children despite the null or minimal training reported by 86.6% of the respondents. Ninety-six point three per cent would like to receive more and better training in pediatric palliative care. Conclusions: Primary care pediatricians claim to have a role in the care at the end of life and demand more training and coordination between the different levels of care

Acompañamiento y seguimiento de los niños con enfermedades neurológicas graves. Atención por parte de un equipo de cuidados paliativos pediátricos especializado / Accompaniment and follow-up of children with severe neurological diseases. Care by a specialised paediatric palliative care team

Los cuidados paliativos pediátricos son aquellos que se proporcionan a niños que padecen una enfermedad que limita o amenaza su vida, por lo que abarcan una amplia variedad de patologías y situaciones clínicas, entre las cuales la patología neurológica ocupa una posición especialmente prevalente y compleja que requiere una atención multidisciplinar, estructurada y adecuadamente coordinada. El objetivo del presente artículo es describir las especificidades que presentan los pacientes con enfermedades neurológicas de entre todos los niños que se podrían beneficiar de una atención paliativa, así como las características de la Unidad de Cuidados Paliativos Pediátricos del Hospital Universitari Sant Joan de Déu y el modelo de atención especializada que brinda

Paediatric palliative care is that given to children suffering from a disease that limits or threatens their life. It therefore covers a wide range of pathologies and clinical situations, among which neurological pathology occupies an especially prevalent and complex position that requires suitably coordinated, structured and multidisciplinry care. The aim of this article is to describe the specificities presented by patients with neurological diseases out of all the children who could benefit from palliative care, as well as the characteristics of the Paediatric Palliative Care Unit of the Sant Joan de Déu University Hospital and the model of specialised care it offers