Retirada de asistencia respiratoria en domicilio: toma de decisiones en cuidados paliativos pediátricos / Withdrawal of assisted ventilation in the home: Making decisions in paediatric palliative care

Los cuidados al final de la vida son de interés creciente en pediatría. Al mismo tiempo, el número de niños con enfermedades sin tratamiento curativo pero altamente tecnificado se ha visto incrementado. La creación de programas de atención multidisciplinar las 24 h del día, 7 días a la semana, puede permitir la vida en el domicilio de pacientes que en origen necesitaban hospitalización prolongada. Se deben evitar nuevos ingresos y adecuar el tratamiento en aras de una mayor calidad de vida. Se describen la toma de decisiones y la posterior retirada de ventilación mecánica en un domicilio. Se exponen la enfermedad causal y el evento agudo que condicionó el empeoramiento. Posteriormente, se discute y revisa la toma de decisiones y el manejo clínico hasta el fallecimiento de la paciente

End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed

[Withdrawal of assisted ventilation in the home: making decisions in paediatric palliative care]. / Retirada de asistencia respiratoria en domicilio: toma de decisiones en cuidados paliativos pediátricos.

End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed.

Cuestionario sobre cuidados paliativos a neuropediatras / Responses by neuropaediatricians to a palliative care questionnaire

Introducción: Actualmente en torno al 70% de los niños atendidos en cuidados paliativos (CP) son enfermos neurológicos. Nuestro objetivo es valorar el grado de formación, interés e implicación de los neuropediatras de España en relación con los cuidados paliativos pediátricos (CPP). Material y métodos: Nos dirigimos a 297 neuropediatras mediante correo electrónico, adjuntando 10 preguntas tipo test. En ellas se hace referencia al conocimiento de los CPP, reconocimiento de pacientes con estas necesidades, implicación del neuropediatra, conocimiento y utilización de recursos paliativos, y formación individual sobre estos temas. Resultados: Participa el 32% (96/297). En torno al 90% conoce qué son los CPP, reconoce a pacientes con pronóstico vital acortado y ha atendido a niños que finalmente han fallecido debido a su enfermedad. El 61% ha realizado alguna vez un informe de «no reanimación». El 77% considera la casa como el lugar idóneo para fallecer (si la atención es adecuada), el 9% el hospital y el 14% cualquiera de los dos previos. El 52% ha contactado alguna vez con recursos locales de CP y el 61% deriva o derivaría pacientes para que sean seguidos conjuntamente (por CP y neuropediatría). Más de la mitad considera no tener formación suficiente para atender estos pacientes y al 80% le gustaría ampliar sus conocimientos en CPP.Conclusión: Los neuropediatras encuestados atienden con frecuencia niños con pronóstico vital acortado. El grado de implicación con estos pacientes es alto, aunque mayoritariamente se necesita y se desea mayor formación en CP para proporcionar mejor atención a estos enfermos (AU)

Introduction: Up to 70% of children currently treated by Palliative Care Units in Europe are neurological patients. Our objective is to assess the knowledge, interest and involvement in Paediatric Palliative Care (PPC) among Spanish paediatric neurologists. Material and methods:We contacted 297 Neuropaediatricians by and attached a 10-question multiple choice test. This questionnaire was related to the level of knowledge of PPC, identification of patients requiring this specific care, involvement of a paediatric neurologist, use of local palliative resources, and formal training in this subject. Results: Participation rate was 32% (96/297). Around 90% knew the definition of PPC, could identify patients with a short-term survival prognosis, and had treated children who eventually died due to their illnesses. A "non resuscitation order" had been written by 61% of them at least once; 77% considered the patient's home as the preferred location of death (if receiving appropriate care), 9% preferred the hospital, and 14% had no preference for any of these options. Just over half (52%) had contacted local PC resources, and 61% had referred or would refer patients to be seen periodically by both services (PC and Paediatric Neurology). More than half (55%) consider themselves not trained enough to deal with these children, and 80% would like to increase their knowledge about PPC.Conclusion: The paediatric neurologists surveyed frequently deal with children who suffer from incurable diseases. Their level of involvement with these patients is high. However, there is an overwhelming necessity and desire to receive more training to support these children and their families (AU)

[Responses by neuropaediatricians to a palliative care questionnaire]. / Cuestionario sobre cuidados paliativos a neuropediatras.

INTRODUCTION: Up to 70% of children currently treated by Palliative Care Units in Europe are neurological patients. Our objective is to assess the knowledge, interest and involvement in Paediatric Palliative Care (PPC) among Spanish paediatric neurologists. MATERIAL AND METHODS: We contacted 297 Neuropaediatricians by and attached a 10-question multiple choice test. This questionnaire was related to the level of knowledge of PPC, identification of patients requiring this specific care, involvement of a paediatric neurologist, use of local palliative resources, and formal training in this subject. RESULTS: Participation rate was 32% (96/297). Around 90% knew the definition of PPC, could identify patients with a short-term survival prognosis, and had treated children who eventually died due to their illnesses. A "non resuscitation order" had been written by 61% of them at least once; 77% considered the patient́s home as the preferred location of death (if receiving appropriate care), 9% preferred the hospital, and 14% had no preference for any of these options. Just over half (52%) had contacted local PC resources, and 61% had referred or would refer patients to be seen periodically by both services (PC and Paediatric Neurology). More than half (55%) consider themselves not trained enough to deal with these children, and 80% would like to increase their knowledge about PPC. CONCLUSION: The paediatric neurologists surveyed frequently deal with children who suffer from incurable diseases. Their level of involvement with these patients is high. However, there is an overwhelming necessity and desire to receive more training to support these children and their families.

Cuidados paliativos pediátricos: Una necesidad y un reto / Palliative pediatric cares: a need and a challenge

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Limitar el esfuerzo terapéutico: un término poco apropiado / No disponible

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[Gastric tonometry as monitoring system in abdominal surgery]. / Tonometría gástrica como sistema de monitorización en cirugía abdominal.

OBJECTIVE: The aim of this study is the evolution of the intramucosal pH (pHi) during the quirurgic and the immediate postoperative process in pediatric patients, operated in abdominal surgery longer than 90 minutes. MATERIAL AND METHODS: A prospective study including 25 patients was done. In all of them intraabdominal surgery was performed. The mean age was 5.6 +/- 3 years, range from 9 months to 13 years. The operative time was 207 +/- 76 minutes. The pHi was measured by means of a sigmoid tonometer introduced in the stomach. A tonometry was done hourly during the operative procedure, and every 8 hours during the postoperative period. RESULTS: 157 determinations of pHi were made with an average of 6.28 per patient. During the operative period the pHi decreased from 7.36 +/- 0.11 (30') to 7.22 +/- 0.11 (210'). During the postoperative, the pHi increased to 7.36 +/- 0.05, 24 hours later (p < 0.005). CONCLUSIONS: During the surgery there was a significant reduction of the pHi, which recovered 16 hours after in the postoperative.

Tonometría gástrica como sistema de monitorización en cirugía abdominal / Gastric tonometry as monitorition system in abdominal surgery

Objetivo. Estudiar la evolución del pH intramucoso (pHi) durante el proceso quirúrgico y en el postoperatorio inmediato en pacientes pediátricos intervenidos de cirugía abdominal de duración superior a 90 minutos. Material y métodos. Estudio prospectivo de 25 pacientes intervenidos de procesos abdominales. Edad media de 5,6 ñ 3 años, rango de 9 meses a 13 años. Tiempo quirúrgico 207 ñ 76 minutos. Se determinó, el pHi mediante tonometría gástrica introduciendo en estómago un tonómetro sigmoideo, efectuándose una determinación cada hora durante el período intraoperatorio y cada 8 horas en el postoperatorio. Resultados. Se efectuaron 157 determinaciones del pHi con una media de 6,28 determinaciones por paciente. Durante el período intraoperatorio, el pHi descendió de 7,36 ñ 0,11 (a los 30') a 7,22 ñ 0,11 (a los 210') (p = 0,005). En el período postoperatorio, el pHi ascendió hasta 7,36 ñ0,05 a las 24 horas (p < 0,005). Conclusiones. Durante el proceso quirúrgico se produce un descenso significativo del pHi. que se recupera a partir de las 16 horas del postoperatorio. (AU)

[Uremic hemolytic syndrome. Analysis of 43 cases]. / Síndrome hemolítico urémico. Análisis de 43 casos.

OBJECTIVE: The purpose of this study was to describe the epidemiological, clinical and evolution features of hemolytic uremic syndrome (HUS). PATIENTS AND METHODS: A retrospective study of 43 cases of HUS during the last 14 years (1984-1998) was performed. RESULTS: The mean age of the patients was 3.2 years, the incidence during the summer season was the highest and 39 cases (90%) previously had acute gastroenteritis. All children had acute renal failure, 32 of them (74%) required peritoneal dialysis. Anuria was found in 22 case (51%) and the mean duration was 10.3 days. The most frequent complications were: Hypertension in 21 cases (48%), peritonitis in 9 cases (20%), seizures in 8 patients (16%) and 3 deaths (6%). The mean hospital stay was 14.5 days. After one year of ambulatory control, 76% of the children were completely recovered and only two cases (6%) had chronic renal failure. Seizures associated significantly with a bad prognosis (p < 0.05). CONCLUSIONS: HUS has a very important morbimortality. Seizures in the acute phase were associated with a bad prognosis. Anuria for more than 7 days and oliguria for more than 15 days were also predictors of a worse prognosis, but this was not significant.

[Obstructive sleep apnea syndrome in childhood: study of three cases]. / Síndrome de apnea obstructiva del sueño en la infancia: estudio de tres casos.

We report three children with obstructive sleep apnea syndrome, two secondary to pharyngeal obstruction and the third secondary to laryngomalacia. All patients presented important respiratory efforts with inspiratory stridor during sleep, frequent obstructive apneas with important hipoxemia, sweating, and arousal episodes. Two patients suffered excessive daytime sleepiness, behavioral disturbances and development delay, and the third, intelligence in the borderline retardation range, and important heart arritmias (bradycardia with ventricular extrasystoles) during obstructive apneas. In two children the Obstructive Sleep Apnea Syndrome and the secondary symptoms disappeared after adenotonsillectomy. The patient with laryngomalacia required tracheostomy.

Subclavian vein catheterization in critically ill children: analysis of 322 cannulations.

Complications in 322 percutaneous subclavian vein catheters placed in 272 children by the infraclavicular approach were investigated prospectively. Ages ranged from 4 days to 15 years. Incidents during catheter introduction occurred in 13 cases, and were more common when insertion was on the right side (p less than 0.01). Nine (2.8%) required urgent treatment: (6 pneumothorax, 1 hydrothorax, and 2 hemothorax). Anomalous lodging of the catheter tip was more common when insertion was on the right side (p less than 0.05). Complications during catheter maintenance were 3 venous thromboses, 3 catheter obstructions, and 7 migrations out of position. There was no significant difference in complications related to age. Catheter cultures were positive in 33 (17%) of 190 catheters cultured (27 through colonization and 6 through catheter-related sepsis). Staph. epidermidis was the organism most frequently isolated (19 cases; 58%). Catheterization time of more than 5 days and catheter-related sepsis were statistically associated (p less than 0.05). Staph. epidermidis isolation and duration of cannula use were statistically related (p less than 0.01). No catheter-related deaths occurred. We conclude that subclavian vein catheterization is a simple and useful procedure that entails relatively few serious complications when performed by experienced pediatricians.