Healthcare service use for children with chronic complex diseases: A longitudinal six-year follow-up study.

PURPOSE: The objective was analysed the patterns use of healthcare services of this population and the influence of their clinical and sociodemographic characteristics. DESIGN AND METHODS: A six-year longitudinal follow-up study was performed to evaluate the annual healthcare resources use and clinical data among children with complex chronic diseases in Spain between 2015 and 2021. The sample trends in healthcare usage and the associated factors were analysed using ANCOVA and multivariable linear regression models. RESULTS: Patients had high attendance during the follow-up period, with >15 episodes year. This trend decreased over time, especially in children with oncological diseases compared with other diseases (F (16.75; 825.4) = 32.457; p < 0.001). A multivariable model showed that children with a greater number of comorbidities (ß = 0.17), shorter survival time (ß = -0.23), who had contact with the palliative care unit (ß = 0.16), and whose mothers had a higher professional occupation (ß = 0.14), had a greater use of the healthcare system. CONCLUSIONS: Children with a higher number of comorbidities and the use of medical devices made a greater frequentation of health services, showing a trend of decreasing use over time. Socioeconomic factors such as mothers' occupational status determine healthcare frequentation. These results suggest the existence of persistent gaps in care coordination sustained over time. PRACTICAL IMPLICATIONS: Systematized and coordinated models of care for this population should consider the presence of inequalities in health care use.

End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital.   Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents' expressed preferences and the place of death. What is Known: • Various studies have shown how the availability of pediatric palliative care services improves the quality of life of patients and their families while reducing costs. • The place of death is an important factor influencing the quality of end-of-life care for dying people. The increase in palliative care teams increases the number of deaths in the home and having this care available 24/7 increases the probability of dying at home. What is New: • Our study identifies how a longer follow-up time of patients by palliative care teams is significantly associated with death at home and with express and comply with the preferences expressed by families. • Home visits by the palliative care team increase the likelihood that the patient will die at her home and that the preferences expressed by the palliative care team families will be cared for.

Sedation in pediatric palliative care: The role of pediatric palliative care teams.

OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams. METHODS: Ambispective study with the participation of 14 PPCT working in Spain. RESULTS: From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years' experience (66.7% vs. 45.5%, p = 0.018). SIGNIFICANCE OF RESULTS: PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Accompaniment of minors during health care procedures.

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents. We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans. The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.

Professional quality of life in pediatric services: A cross-sectional study.

OBJECTIVE: Determine the quality of working life among the different pediatric nursing professionals, taking into account socio-demographic and work context factors, and the relationship of Burnout, compassion satisfaction and compassion fatigue between different job positions. METHOD: Cross-sectional descriptive observational study carried out between January-March 2019 at the national territory. The professional quality of life was measured with ProQOL IV and sociodemographic characteristics were recorded. The data was encoded in Microsoft Office Excel, and analyzed with SPPS considering statistically significant differences p < 0.05. RESULTS: A total of 68 nurses were included in the study. The results obtained show less satisfaction due to compassion in those professionals who have a permanent employment contract, as well as those who carry out their work in hospitalization positions compared to those in the oncology area. In our sample there are very high levels of compassion fatigue, in addition we observed a significant relationship between compassion fatigue and religious belief, being higher in believing professionals. CONCLUSIONS: It's necessary to identify associated factors in the professional quality of life to propose intervention strategies and improvement conditions, requiring greater involvement of health institutions to improve the professional quality of life in pediatric nursing.

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.

[Comprehensive approach to children with cerebral palsy]. / Abordaje integral del niño con parálisis cerebral.

Infantile cerebral palsy is one of the most prevalent diseases and the most frequent cause of disability in paediatrics. Children with cerebral palsy have complex health care needs and often require the care of a multidisciplinary team. However, in many cases there is no paediatrician with overall responsibility for coordinating follow-up. We have produced a support document intended for paediatricians coordinating the care of children with cerebral palsy. Our aim is to provide an ordered compilation of the main issues these patients may develop, to know how to identify and address them if necessary, and to establish criteria for referring these patients to other specialists.

[Patient with respiratory compromise controlled by a pediatric home hospitalization unit.] / Paciente con compromiso respiratorio controlado por una unidad pediátrica de hospitalización a domicilio.

OBJECTIVE: The use of paediatric home oxygen therapy is initiated in neonatal chronic lung disease; later it spreads to other patients with chronic hypoxemia. The frequency and need for oxygen therapy is growing; this, together with the family benefits, justify the implementation of a home treatment plan. Our objective with this work was to know and describe the characteristics of the patients admitted to the Pediatric HaD Unit of a tertiary hospital, the average cost per patient of oxygen therapy during 13 years of review, and evaluate the quality of the service. METHODS: Retrospective descriptive study by reviewing records of patients admitted to home care hospital at home of a paediatric tertiary care hospital (n=124) for 13 years (2000-2013), to learn and to describe the characteristics of the unit and these patients, and costs. After that, it was done statistical analysis through t-Student. RESULTS: 124 patients with chronic hypoxemia patients with mean age of 2.2 years. The most frequent cause was lung diseases, including ECPN as the most important. They accounted 14.2% of hospitalizations in home care hospital at home department, and 60% were achieved clinical stability. The mean cost was 1,991.1€ per patient, which supposes 93% of economical saving in comparison with conventional hospitalization (3,988.91€). CONCLUSIONS: The use of oxygen in HaD improves the quality of life and survival of our patients, reducing the number of readmissions and hospital costs.

OBJETIVO: El empleo de oxigenoterapia domiciliaria pediátrica se inicia en la enfermedad pulmonar crónica neonatal (EPCN), extendiéndose posteriormente a otros pacientes con hipoxemia crónica. La frecuencia y necesidad de oxigenoterapia está en crecimiento, esto, junto a los beneficios familiares, justifican la implantación de un plan de tratamiento domiciliario. Nuestro objetivo con este trabajo fue conocer y describir las características de los pacientes ingresados en la Unidad de HaD Pediátrica de un hospital de tercer nivel, el coste medio por paciente de la oxigenoterapia durante 13 años de revisión, y evaluar la calidad del servicio. METODOS: Estudio descriptivo retrospectivo mediante revisión de las historias de los pacientes ingresados en hospitalización a domicilio pediátrica (HaD) de un hospital de tercer nivel (n=124) durante 13 años (2000-2013), con descripción de las distintas características de la unidad, los pacientes incluidos y el coste. Posteriormente, se realizó análisis estadístico con t-Student. RESULTADOS: Se analizaron 124 pacientes con hipoxemia crónica, con una edad media de 2,2 años, siendo la causa más frecuente las enfermedades pulmonares y entre ellas la EPCN. Estos pacientes representaron el 14,2% de los ingresos en HaD, y en el 60% fue posible la retirada de la oxigenoterapia por buena evolución clínica. El Coste total medio por paciente fue de 1.991,1€, lo que supone un ahorro respecto a la modalidad de hospitalización convencional (3.988,91€) del 93% en nuestro centro. CONCLUSIONES: El uso de oxígeno en HaD mejora la calidad de vida y supervivencia de nuestros pacientes, disminuyendo el número de reingresos y costes hospitalarios.

[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.

Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study.

BACKGROUND: Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other out-of-pocket expenses for healthcare. The use of these alternative health resources is sometimes unclear and may lead to health inequalities. To characterize the use made of alternative healthcare resources for children with complex chronic conditions. Additionally, we evaluate the influence of sociodemographic factors on the distribution of this utilization of resources; (2) Methods: Cross-sectional study. Children with complex chronic diseases were treated at a tertiary hospital in Granada, Spain in 2016. We analyzed their use of healthcare resources and socioeconomic variables. This research complies with STROBE guidelines for observational studies; (3) Results: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63). A total of 105 children (39.6%) attended private consultations with specialists, and 12.1% (n = 32) of the children had additional private health insurance. One out three parents belonged to a mutual support association (n = 78), and 26% (n = 69) of the children used alternative therapies. Furthermore, 75.4% (n = 199) of the children received no psychological support. Children whose parents had a higher educational level and occupations status made greater use of parallel healthcare resources.; (4) Conclusions: A significant proportion of children used multiple health resources in addition to the public healthcare system depending on sociodemographic determinants. Studies are needed to determine whether the use of these alternative services achieves better levels of health.

Socioeconomic Factors and Quality of Life Perceived by Parents and Children with Complex Chronic Conditions in Spain.

Health-related quality of life of children with complex chronic conditions could be affected by sociodemographic factors. Most studies focus exclusively on the parents' perceptions of quality of life. This study aimed to determine the health-related quality of life of these children, according to their parents and the children themselves. A cross-sectional study was developed on children aged over five years with complex chronic conditions. Health-related quality of life, educational attainment, and social status were evaluated. A total of 101 children were included with a mean age of 10.48 years, and 35.6% were female. The most frequent disease was oncological (28.7%). Children perceived a better health-related quality of life, compared to their parents' assessment: median difference -8.4 (95%CI: -9.2 to -3.8). Moreover, differences were observed by socioeconomic factors. Parents and children with complex chronic conditions perceive differently the health-related quality of life. Social determinants associate with an uneven perceived quality of life.

Executive summary of outpatient parenteral antimicrobial therapy: Guidelines of the Spanish Society of Clinical Microbiology and Infectious Diseases and the Spanish Domiciliary Hospitalisation Society.

Outpatient parenteral antimicrobial therapy (OPAT) programmes make it possible to start or complete intravenous antimicrobial therapy for practically any type of infection at home, provided that patient selection is appropriate for the type of OPAT programme available. Although the clinical management of infections in the home setting is comparable in many respects to that offered in conventional hospitalization (selection of antibiotics, duration of treatment, etc.), there are many aspects that are specific to this care modality. It is essential to be aware of them so that OPAT continues to be as safe and effective as inpatient care. The objective of this clinical guideline is therefore to provide evidence- and expert-based recommendations with a view to standardizing clinical practice in this care modality and contribute to a progressive increase in the number of patients who can be cared for and receive intravenous therapy in their own homes.

Acompañamiento a los menores durante los procedimientos asistenciales / Accompaniment of minors during health care procedures

En la práctica clínica no es infrecuente observar situaciones en las cuales se invita a los progenitores y la familia a dejar a los menores en soledad junto al equipo asistencial en estancias repletas de tecnología durante la realización de procedimientos, dando lugar en ocasiones a conflictos, pero sobre todo con consecuencias emocionales en los niños o adolescentes.Se ha realizado una revisión narrativa de la literatura mediante búsqueda bibliográfica en la biblioteca virtual del sistema sanitario público de Andalucía, siendo los criterios de inclusión utilizados, estudios que conciernen a las experiencias de profesionales sanitarios y familiares sobre el acompañamiento de la población pediátrica en los procedimientos asistenciales. El resultado de la búsqueda se limitó a trabajos en humanos en español e inglés.Esta revisión pone de manifiesto la necesidad de humanizar la asistencia sanitaria para mejorar la calidad de la atención. Se justifica la necesidad de acompañamiento de los menores, a través de trabajos que han analizado los factores que intervienen en la permanencia de estas conductas y actitudes tanto por profesionales como padres. Se recomienda la necesidad de políticas institucionales y figuras mediadoras que recojan las declaraciones de algunas sociedades nacionales e internacionales teniendo en cuenta aspectos legales, pero sobre todo los valores en juego desde una ética del cuidado y búsqueda del interés superior del menor.(AU)

In clinical practice, it is not rare to encounter situations in which parents and families are asked to leave the child alone with the health care team in rooms full of devices throughout the performance of procedures, which at times may give rise not only to conflicts but, more importantly, emotional sequelae in children or adolescents.We conducted a narrative review of the literature by searching the digital library of the public health care system of Andalusia for articles concerning the experiences of health care professionals and families with the accompaniment of paediatric patients during health care procedures. We restricted the search to studies published in Spanish or English and conducted in humans.The review evinced the need to humanise care in order to improve care quality. The need to accompany minors is supported by the evidence from works that have analysed the factors involved in the persistence of these behaviours and attitudes in both professionals and parents. We consider it necessary to develop institutional policies and appoint mediators to compile the statements of different national and international societies, taking into account legal aspects but, above all, the pertinent values from a health care ethics perspective, and in pursuit of the best interests of the child.(AU)

Conocimiento y opinión sobre la atención integrada del niño con parálisis cerebral desde Atención Primaria / Knowledge and opinion on integrated care for children with cerebral palsy in Primary Car

Introducción: los pacientes con parálisis cerebral infantil (PCI) precisan de múltiples cuidados y terapias. El objetivo principal del estudio es describir la opinión, percepción y conocimiento sobre el abordaje integral del niño con PCI de pediatras de Atención Primaria (AP), así como su manejo actual sobre el mismo. Material y métodos: estudio transversal, descriptivo y de ámbito nacional, mediante encuesta en línea, a pediatras y médicos de familia dedicados a la pediatría que ejercían en AP entre enero y febrero de 2021. Resultados: se recibieron 335 respuestas. El 91% piensa que no dispone de formación suficiente y que su conocimiento es limitado, reconociendo el 65% que no está capacitado para el manejo del niño con PCI. Un 97,3% opina que es necesaria la formación en esta patología y el 99% que es necesaria la creación de protocolos específicos. Al 57,2% le gustaría ser pediatra coordinador trabajando con el pediatra hospitalario. El 75% estima que los cuidadores no están satisfechos con la atención que reciben, considerando que la atención integral al niño con PCI desde AP o disponer de unidades específicas para ello mejoraría la satisfacción familiar, resultando estadísticamente significativo. Conclusiones: la mayoría de los pediatras no se sienten capacitados para llevar a cabo el manejo del niño con PCI desde AP y consideran necesario la formación y creación de guías específicas. Opinan que la atención integral del paciente con PCI mejoraría la calidad de vida de las familias, abogando para ello por modelos mixtos de coordinación (AU)

Objective: patients with cerebral palsy (CP) require multiple treatments and services. The primary objective of the study was to describe the opinion, perception and knowledge of primary care (PC) paediatricians about the comprehensive approach to the care of children with CP and their current management of this condition.Material and methods: cross-sectional, descriptive and nationwide study carried out through an online survey of paediatricians and family physicians dedicated to paediatric care and practicing in the PC level in January and February 2021.Results: we received a total of 335 responses. Ninety-one percent of respondents thought they had insufficient training and limited knowledge, and 65% did not considered themselves adequately qualified to manage children with CP. In addition, 97.3% believed that training on CP is necessary and 99% that specific protocols need to be developed. Of all respondents, 57.2% would like to be the care coordinator working in collaboration with hospital paediatricians. Last of all, 75% believed that the caregivers were not satisfied with the care received, and that the provision of comprehensive care to children with CP from PC or the availability of specific units for their management would improve family satisfaction, a result that was statistically significant.Conclusions: most paediatricians do not feel qualified for the management of children with CP from PC and consider that training and the development of specific guidelines are necessary. Professionals believe that an integrated, comprehensive approach to the care of these patients would improve the quality of life of families, and advocated for hybrid care coordination models. (AU)

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)

Abordaje integral del niño con parálisis cerebral / Comprehensive approach to children with cerebral palsy

La parálisis cerebral infantil es una de las enfermedades más prevalentes y la causa de discapacidad más frecuente en pediatría. Los niños con parálisis cerebral tienen necesidades de atención médica complejas y a menudo requieren atención por un equipo multidisciplinar, sin embargo, en muchas ocasiones no existe la figura de un pediatra responsable que coordine todo el seguimiento.Realizamos un documento de ayuda en el abordaje de niños con parálisis cerebral dirigido a pediatras que sean coordinadores en la atención de estos pacientes. Nuestra finalidad es la de recopilar de forma ordenada los principales problemas que pueden desarrollar estos pacientes, saber cómo identificarlos y abordarlos en caso necesario, y establecer criterios para la derivación de estos pacientes a otros especialistas. (AU)

Infantile cerebral palsy is one of the most prevalent diseases and the most frequent cause of disability in paediatrics. Children with cerebral palsy have complex health care needs and often require the care of a multidisciplinary team. However, in many cases there is no paediatrician with overall responsibility for coordinating follow-up.We have produced a support document intended for paediatricians coordinating the care of children with cerebral palsy. Our aim is to provide an ordered compilation of the main issues these patients may develop, to know how to identify and address them if necessary, and to establish criteria for referring these patients to other specialists. (AU)

Trastornos KAT6B: enterrando los síndromes Say-Barber-Biesecker-Young-Simpson y genitopatelar / The KAT6B-related disorders: Burying Say-Barber-Biesecker-Young-Simpson and genitopatellar syndrome

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Executive summary of outpatient parenteral antimicrobial therapy: Guidelines of the Spanish Society of Clinical Microbiology and Infectious Diseases and the Spanish Domiciliary Hospitalisation Society / Resumen ejecutivo del tratamiento antimicrobiano domiciliario endovenoso: guía de la Sociedad Española de Enfermedades Infecciosas y Microbiología Clínica y la Sociedad Española de Hospitalización a Domicilio

Outpatient parenteral antimicrobial therapy (OPAT) programmes make it possible to start or complete intravenous antimicrobial therapy for practically any type of infection at home, provided that patient selection is appropriate for the type of OPAT programme available. Although the clinical management of infections in the home setting is comparable in many respects to that offered in conventional hospitalization (selection of antibiotics, duration of treatment, etc.), there are many aspects that are specific to this care modality. It is essential to be aware of them so that OPAT continues to be as safe and effective as inpatient care. The objective of this clinical guideline is therefore to provide evidence- and expert-based recommendations with a view to standardizing clinical practice in this care modality and contribute to a progressive increase in the number of patients who can be cared for and receive intravenous therapy in their own homes

Los programas de tratamiento antibiótico domiciliario endovenoso (TADE) permiten iniciar o completar el tratamiento antimicrobiano por vía endovenosa de prácticamente cualquier tipo de infección en el domicilio, siempre y cuando se realice una selección del paciente acorde al tipo de programa de TADE que se dispone. Aunque hay aspectos del manejo clínico de las infecciones en el domicilio que son superponibles en la mayoría de los casos a la realizada en la hospitalización convencional (selección de la antibioterapia, duración del tratamiento, etc.), existen numerosos aspectos que son específicos de esta modalidad asistencial. Resulta imprescindible conocerlos para que el TADE siga siendo igual de eficaz y seguro que la hospitalización convencional. El objetivo de esta guía clínica es por tanto, proporcionar recomendaciones basadas en la evidencia realizadas por expertos para homogeneizar la práctica clínica de esta modalidad asistencial y contribuir a que se incremente progresivamente el número de pacientes que pueden ser atendidos y recibir tratamiento endovenoso en su propio domicilio

Calidad de vida profesional en servicios de pediatría: estudio transversal / Professional quality of life in pediatric services: A cross-sectional study

Objetivo: Determinar la calidad de vida laboral entre los diferentes profesionales de enfermería pediátrica,teniendo en cuenta factores sociodemográficos y de contexto laboral, y la relación del burnout, satisfacción por compasión y fatiga por compasión entre los diferentes puestos de trabajo. Método: Estudio observacional descriptivo transversal desarrollado entre enero y marzo de 2019 en el ámbito nacional. Se recopilaron características sociodemográficas y el Cuestionario ProQOL IV. Los datos se codificaron en Microsoft Office Excel, y se analizaron con SPSS, considerándose diferencias estadísticamente significativas para valores p<0,05. Resultados: Participaron 68 enfermeras. Los resultados obtenidos muestran una menor satisfacción por compasión en aquellos profesionales que tienen un contrato de trabajo fijo, así como los que desempeñan su labor en puestos de hospitalización respecto a los del área de oncología. En nuestra muestra existe una elevada fatiga por compasión, observando una relación significativa entre la fatiga por compasión y la creencia religiosa, siendo superior en los profesionales creyentes. Conclusiones: Es necesario identificar factores asociados con la calidad de vida profesional para plantear estrategias de intervención y condiciones de mejora, siendo precisa una mayor implicación de las instituciones sanitarias para la mejora de la calidad de vida profesional en la enfermería pediátrica.(AU)

Objective: Determine the quality of working life among the different pediatric nursing professionals, taking into account socio-demographic and work context factors, and the relationship of Burnout, compassion satisfaction and compassion fatigue between different job positions. Method: Cross-sectional descriptive observational study carried out between January-March 2019 at the national territory. The professional quality of life was measured with ProQOL IV and sociodemographic characteristics were recorded. The data was encoded in Microsoft Office Excel, and analyzed with SPPS considering statistically significant differences p <0.05. Results: A total of 68 nurses were included in the study. The results obtained show less satisfaction due to compassion in those professionals who have a permanent employment contract, as well as those who carry out their work in hospitalization positions compared to those in the oncology area. In our sample there are very high levels of compassion fatigue, in addition we observed a significant relationship between compassion fatigue and religious belief, being higher in believing professionals. Conclusions: It's necessary to identify associated factors in the professional quality of life to propose intervention strategies and improvement conditions, requiring greater involvement of health institutions to improve the professional quality of life in pediatric nursing.(AU)