Recomendaciones de no hacer en distintos ámbitos de la atención pediátrica / Do not do recommendations in different paediatric care settings

Introducción: Muchas son las iniciativas encaminadas a eliminar intervenciones clínicas de poco valor en la asistencia sanitaria. Desde el Comité de Calidad Asistencial y Seguridad del Paciente de la Asociación Española de Pediatría, se ha propuesto la elaboración de recomendaciones de «no hacer» (RNH) con el objetivo de señalar una serie de prácticas evitables en la atención del paciente pediátrico en atención primaria, urgencias, hospitalización y domicilio. Material y métodos: Este trabajo se desarrolló en 2fases: una primera en la que se propusieron posibles RNH y una segunda en la que se consensuaron las recomendaciones finales mediante el método Delphi. Tanto las propuestas como las evaluaciones partieron de miembros de los grupos y sociedades pediátricas a los que se les realizó la propuesta, coordinados por miembros del Comité de Calidad Asistencial y Seguridad del Paciente. Resultados: Fueron propuestas un total de 164 RNH por la Sociedad Española de Neonatología, la Asociación Española de Pediatría de Atención Primaria, la Sociedad Española de Urgencias de Pediatría, la Sociedad Española de Pediatría Interna Hospitalaria y el Comité de Medicamentos de la Asociación Española de Pediatría con el Grupo Español de Farmacia Pediátrica de la Sociedad Española de Farmacia Hospitalaria. Se logró reducir el conjunto inicial a 42 RNH y en sucesivas fases se llegó a la selección final de 25 RNH, 5 RNH por cada grupo o sociedad. Conclusiones: Este proyecto ha permitido seleccionar y consensuar una serie de recomendaciones para evitar prácticas inseguras, ineficientes o de escaso valor en distintos ámbitos de la atención pediátrica, lo que podría resultar útil para mejorar la seguridad y la calidad de nuestra actividad asistencial. (AU)

Introduction: There are many initiatives aimed at eliminating health care interventions of limited utility in clinical practice. The Committee on Care Quality and Patient Safety of the Spanish Association of Pediatrics has proposed the development of «do not do» recommendations (DNDRs) to establish a series of practices to be avoided in the care of paediatric patients in primary, emergency, inpatient and home-based care. Material and methods: The project was carried out in 2 phases: a first phase in which possible DNDRs were proposed, and a second in which the final recommendations were established by consensus using the Delphi method. Recommendations were proposed and evaluated by members of the professional groups and paediatrics societies invited to participate in the project under the coordination of members of the Committee on Care Quality and Patient Safety. Results: A total of 164 DNDRs were proposed by the Spanish Society of Neonatology, the Spanish Association of Primary Care Paediatrics, the Spanish Society of Paediatric Emergency Medicine, the Spanish Society of Internal Hospital Paediatrics and the Medicines Committee of the Spanish Association of Pediatrics and the Spanish Group of Paediatric Pharmacy of the Spanish Society of Hospital Pharmacy. The initial set was limited to 42 DNDRs, and the selection over successive rounds yielded a final set of 25 DNDRs, with 5 DNDRs for each paediatrics group or society. Conclusions: This project allowed the selection and establishment by consensus of a series of recommendations to avoid unsafe, inefficient or low-value practices in different areas of paediatric care, which may contribute to improving the safety and quality of paediatric clinical practice. (AU)

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.

Do not do recommendations in different paediatric care settings.

INTRODUCTION: There are many initiatives aimed at eliminating health care interventions of limited utility in clinical practice. The Committee on Care Quality and Patient Safety of the Spanish Association of Pediatrics (AEP) has proposed the development of "DO NOT DO" recommendations (DNDRs) to establish a series of practices to be avoided in the care of paediatric patients in primary, emergency, inpatient and home-based care. MATERIAL AND METHODS: The project was carried out in 2 phases: a first phase in which possible DNDRs were proposed, and a second in which the final recommendations were established by consensus using the Delphi method. Recommendations were proposed and evaluated by members of the professional groups and paediatrics societies invited to participate in the project under the coordination of members of the Committee on Care Quality and Patient Safety. RESULTS: A total of 164 DNDRs were proposed by the Spanish Society of Neonatology, the Spanish Association of Primary Care Paediatrics, the Spanish Society of Paediatric Emergency Medicine, the Spanish Society of Internal Hospital Paediatrics and the Medicines Committee of the AEP and the Spanish Group of Paediatric Pharmacy of the Spanish Society of Hospital Pharmacy. The initial set was limited to 42 DNDRs, and the selection over successive rounds yielded a final set of 25 DNDRs, with 5 DNDRs for each paediatrics group or society. CONCLUSIONS: This project allowed the selection and establishment by consensus of a series of recommendations to avoid unsafe, inefficient or low-value practices in different areas of paediatric care, which may contribute to improving the safety and quality of paediatric clinical practice.

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)

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.

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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[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.