Estudio de los pacientes pediátricos crónicos complejos ingresados en un servicio de pediatría a lo largo de 12 meses / A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period

Introducción: En las últimas décadas se ha incrementado el número de pacientes crónicos complejos (PCC). Existen pocos datos referentes a la prevalencia de PCC en población pediátrica y su impacto en los ingresos hospitalarios. Los objetivos principales de este trabajo son determinar en nuestro medio la proporción de PCC en hospitalización pediátrica y compararla con la de otros grupos de pacientes ingresados (agudos y crónicos). Pacientes y métodos: Estudio descriptivo retrospectivo realizado en un hospital materno-infantil terciario (de diciembre de 2016 a noviembre de 2017). Se incluyó a todos los pacientes ingresados en el Servicio de Pediatría con una periodicidad quincenal. Se recogieron una serie de variables demográficas, clínicas y de gestión. Para identificar el grado de complejidad de los pacientes se utilizó el sistema de clasificación Clinical Risk Group (CRG) y se crearon 3grupos: agudos, crónicos y PCC. Para el análisis estadístico se usó SPSS v24. Resultados: Se incluyó a 1.433 pacientes. La proporción de PCC en la planta de Pediatría fue del 14,4%. Los PCC tenían mayor edad, ingresaron principalmente por descompensación o progresión de su enfermedad de base, estuvieron ingresados más tiempo y precisaron soporte en la Unidad de Cuidados Intensivos Pediátricos con mayor frecuencia que los otros subgupos. Un 44,7% de los PCC era portador de dispositivos tecnológicos. Del total de largas estancias (>1 mes), el 71,3% fue de PCC. Conclusiones: Los PCC requieren de estancias hospitalarias largas, tienen mayor necesidad de cuidados intensivos y uso de tecnología. Es necesario plantear nuevos enfoques de tratamiento y seguimiento que sean costo-eficientes y que, a la vez, disminuyan el impacto de la enfermedad en el niño y su familia. (AU)

Introduction: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main objectives of this study are to determine the proportion of CCC in the paediatric hospital population and compare them with other groups of patients admitted (acute and chronic). Patients and methods: A descriptive, retrospective study was carried out in a tertiary maternity-paediatric hospital (from December 2016 to November 2017). All patients admitted into the Paediatric Department were recruited with a fortnightly frequency. A series of demographic, clinical, and pregnancy data were collected. In order to identify the level of complexity of the patients, the Clinical Risk Group (CRG) was used, with 3groups being created: acute, chronic, and CCC. Statistics analysis was performed using SPSS v24. Results: A total of 1,433 patients were included. The proportion of CCC on the Paediatric Ward was 14.4%. The CCC were older patients, mainly admitted due to decompensation or progression of their underlying disease, had a longer admission time, and required support in the Paediatric Intensive Care Unit more often than that of the other sub-groups. Just under half (44.7%) of the CCC were carriers of a technological device. Of the total of long stays (>1 month), 71.3% had CCC. Conclusions: Patients with CCC require long hospital stays, a greater need of intensive care, and use of technology. New approaches to treatment and follow-up need to be established. They should be cost-effective, and at the same time decrease the impact of the disease on the children and their family. (AU)

A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period.

INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main objectives of this study are to determine the proportion of CCC in the paediatric hospital population and compare them with other groups of patients admitted (acute and chronic). PATIENTS AND METHODS: A descriptive, retrospective study was carried out in a tertiary maternity-paediatric hospital (from December 2016 to November 2017). All patients admitted into the Paediatric Department were recruited with a fortnightly frequency. A series of demographic, clinical, and pregnancy data were collected. In order to identify the level of complexity of the patients, the Clinical Risk Group (CRG) was used, with 3 groups being created: acute, chronic, and CCC. Statistics analysis was performed using SPSS v24. RESULTS: A total of 1433 patients were included. The proportion of CCC on the Paediatric Ward was 14.4%. The CCC were older patients, mainly admitted due to decompensation or progression of their underlying disease, had a longer admission time, and required support in the Paediatric Intensive Care Unit (PICU) more often than that of the other sub-groups. Just under half (44.7%) of the CCC were carriers of a technological device. Of the total of long stays (>1 month), 71.3% had CCC. CONCLUSIONS: Patients with CCC require long hospital stays, a greater need of intensive care, and use of technology. New approaches to treatment and follow-up need to be established. They should be cost-effective, and at the same time decrease the impact of the disease on the children and their family.

Lactant amb torticoli aguda. És sempre una entitat benigna? / Lactante con tortícolis aguda. ¿És siempre una entidad benigna? / Infant with acute torticollis. Is it always a benign entity?

Introducció. L’encefalomielitis aguda disseminada (EMAD) és una malaltia inflamatòria immunomediada desmielinitzant del sistema nerviós central. Associa simptomatologia neurològica multifocal i encefalopatia. Afecta fonamentalment la població infantil, amb una incidència anual estimada en menors de catorze anys del 0,64/100.000. El diagnòstic de l’EMAD és d’exclusió. Cas clínic. Lactant de quatre mesos, sana i amb neurodesenvolupament adequat, és portada a urgències per desviació lateral dreta de cap i coll. Associa quadre catarral sense febre. A les 48 hores de l’ingrés desenvolupa oftalmoplegia, sialorrea i nivell d’alerta alternant. Atesa l’aparició de simptomatologia neurològica, es deriva a centre de referència on s’amplia l’estudi etiològic. La ressonància magnètica (RM) cerebroespinal mostra alteració d’intensitat de senyal de tàlems, nuclis lenticulars i tronc de l’encèfal esquerre. Davant la sospita d’EMAD, rep tractament amb glucocorticoides i gammaglobulina. També rep biotina i tiamina a l’espera de l’estudi metabòlic. La RM cerebroespinal al cap de deu dies mostra reducció de les lesions. La recuperació dels dèficits neurològics dos mesos després és completa. Comentaris. La clínica, l’evolució i els estudis complementaris són suggestius d’EMAD. Les lesions típiques d’aquesta entitat a la RM afecten la substància blanca subcortical profunda de forma bilateral i asimètrica. També hi pot haver afectació de ganglis de base, tàlem i tronc de l’encèfal. El diagnòstic diferencial inclou encefalitis infecciosa, esclerosi múltiple i metabolopaties. La primera línia de tractament són els bols de glucocorticoides. La majoria de casos presenta recuperació completa. L’interès del cas exposat rau en l’edat de presentació. (AU)

Introducción. La encefalomielitis aguda diseminada (EMAD) es una enfermedad inflamatoria inmunomediada desmielinizante del sistema nervioso central. Asocia sintomatología neurológica multifocal y encefalopatía. Afecta fundamentalmente la población infantil con una incidencia anual estimada en menores de 14 años del 0,64/100.000. El diagnóstico de EMAD es de exclusión. Caso clínico. Lactante de 4 meses, sana y con adecuado neurodesarrollo, es traída a urgencias por desviación lateral derecha de cabeza y cuello; asocia cuadro catarral sin fiebre. A las 48 horas del ingreso desarrolla oftalmoplejía, sialorrea y nivel de alerta alternante. Dada la aparición de sintomatología neurológica, se deriva a centro de referencia donde se amplía el estudio etiológico. La resonancia magnética (RM) cerebroespinal muestra alteración de intensidad de señal de tálamos, núcleos lenticulares y tronco del encéfalo izquierdo. Ante la sospecha de EMAD, recibe tratamiento con glucocorticoides y gammaglobulina. También recibe biotina y tiamina a la espera del estudio metabólico. La RM cerebroespinal a los 10 días muestra reducción de las lesiones. La recuperación de los déficits neurológicos dos meses después es completa. Comentarios. La clínica, evolución y estudios complementarios son sugestivos de EMAD. Las lesiones típicas de esta entidad en la RM afectan la sustancia blanca subcortical profunda de forma bilateral y asimétrica. También puede haber afectación de ganglios de base, tálamo y tronco del encéfalo. El diagnóstico diferencial incluye encefalitis infecciosa, esclerosis múltiple y metabolopatías. La primera línea de tratamiento son bolus de glucocorticoides. La mayoría de casos presenta recuperación completa. El interés del caso expuesto radica en la edad de presentación. (AU)

Introduction. Acute disseminated encephalomyelitis (ADEM) is a demyelinating immune mediated inflammatory disease affecting the central nervous system. It associates multifocal neurological symptoms and encephalopathy. It predominantly affects children, and its annual cumulative incidence in children under 14 years is 0.64/100,000. The diagnosis of ADEM is one of exclusion. Case report. A previously healthy 4-month-old infant with adequate neurodevelopment was seen in the emergency department due to acute onset of right lateral deviation of head and neck, associated with cold symptoms without fever. 48 hours after admission, the infant developed ophthalmoplegia, sialorrhea and alternating alert level. Given the development of neurological symptoms, she was referred to a tertiary hospital for evaluation. Cerebrospinal magnetic resonance imaging (MRI) showed altered signal intensity of the thalamus, lenticular nuclei, and left brainstem. ADEM was suspected and glucocorticoids and gamma globulin were administered. She also received biotin and thiamine while awaiting results of a metabolic panel. Cerebrospinal MRI at 10 days showed improvement of the lesions, and a full recovery was reached after two months. Comments. The clinical presentation, diagnostic studies, and clinical evolution are suggestive of ADEM. Typical MRI lesions involve deep subcortical white matter bilaterally and asymmetrically. There may also be involvement of the basal ganglia, thalamus, and brainstem. Differential diagnosis includes infectious encephalitis, multiple sclerosis, and metabolic diseases. First line treatment are glucocorticoids. Most cases have complete recovery. The interest of the case lies in the age of presentation. (AU)

[A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period]. / Estudio de los pacientes pediátricos crónicos complejos ingresados en un servicio de pediatría a lo largo de 12 meses.

INTRODUCTION: The number of patients with complex chronic conditions (CCC) has increased in the last 20 years or so. There is limited data as regards the prevalence of CCC in the paediatric population and its impact on hospital admissions. The main objectives of this study are to determine the proportion of CCC in the paediatric hospital population and compare them with other groups of patients admitted (acute and chronic). PATIENTS AND METHODS: A descriptive, retrospective study was carried out in a tertiary maternity-paediatric hospital (from December 2016 to November 2017). All patients admitted into the Paediatric Department were recruited with a fortnightly frequency. A series of demographic, clinical, and pregnancy data were collected. In order to identify the level of complexity of the patients, the Clinical Risk Group (CRG) was used, with 3groups being created: acute, chronic, and CCC. Statistics analysis was performed using SPSS v24. RESULTS: A total of 1,433 patients were included. The proportion of CCC on the Paediatric Ward was 14.4%. The CCC were older patients, mainly admitted due to decompensation or progression of their underlying disease, had a longer admission time, and required support in the Paediatric Intensive Care Unit more often than that of the other sub-groups. Just under half (44.7%) of the CCC were carriers of a technological device. Of the total of long stays (>1 month), 71.3% had CCC. CONCLUSIONS: Patients with CCC require long hospital stays, a greater need of intensive care, and use of technology. New approaches to treatment and follow-up need to be established. They should be cost-effective, and at the same time decrease the impact of the disease on the children and their family.

Patient experience in the pediatric emergency department: do parents and children feel the same?

The objectives are to describe the experience of children and parents in a pediatric emergency service (PED) and to determine whether there are differences of opinion between the two groups. This was a descriptive study. A questionnaire was designed based on the Picker questionnaire on the patient experience. From July through December 2015, a survey was made of the children aged 8-18 treated in the PED, as well as of their parents. The proportion of dissatisfaction was determined. A total of 514 questionnaires (257 children, 257 parents) were completed. The most poorly rated aspects according to the children and parents were the entertainment activities (43.2%), the waiting time (23.7%), and the treatment for pain (10.5%). Differences were detected in the experiences of the children and the parents regarding the overlong waiting time (28.0% children vs 19.5% parents; p = 0.023), inadequate explanations (7.0 vs 1.6%, p = 0.002), inadequate treatment for pain (14.4 vs 6.6%; p = 0.004), and insufficient privacy (11.7 vs 2.7%; p < 0.001). CONCLUSION: The entertainment activities during the wait and the waiting time are the two elements viewed most negatively by the children and the parents. The children tend to evaluate certain aspects of their experience as patients more negatively, which needs to be borne in mind in order to improve the attention provided. What is Known: • Studying the experience of patients is a key point in patient-centered medicine. • The experience of the pediatric patient has been little studied to date. The experience of the children is often inferred from that of their parents. Nevertheless, the experience of the children as patients might be different. What is New: • Overall, the experience of children and parents in the pediatric emergency department in the study is positive. Some aspects of the experience in emergency are poorly rated by the children, such as the waiting time, the information provided, treatment for pain, and privacy during the visit. • The experience of the children (and not merely that of their parents) needs to be studied in order to improve those areas that are rated poorly do as to enrich the experience in the emergency department.