Factibilidad, eficacia y satisfacción lograda por la intervención transdisciplinaria de un comité de ética clínico-hospitalario. Un estudio cualicuantitativo / Feasibility, effectiveness, and satisfaction achieved by the transdisciplinary intervention of a clinical-hospital ethics committee. A qualitative and quantitative study

Introducción. Las funciones del Comité de Ética Clínica (CEC) son educativas, normativas, consultivas, mediadoras y reflexivas. Como cualquier servicio de salud, las consultas de casos a un CEC deben ser sujetas a revisión y mejora de la calidad. Los objetivos fueron evaluar la factibilidad, la efectividad y la satisfacción de las recomendaciones ético-asistenciales dadas por el CEC, y evaluar su impacto en el equipo tratante y en la familia. Población y métodos. Estudio descriptivo, retrospectivo, cualicuantitativo, de casos clínicos presentados en el Comité de Ética Clínica del hospital desde el 1 de enero de 2013 hasta el 31 de diciembre de 2017, según datos del libro de actas, historias clínicas, registros de la Oficina de Comunicación a Distancia y entrevistas semiestructuradas al equipo de salud. Resultados. Se analizaron 108 casos (106 pacientes), 73 casos con encuesta y registros, y 35 solamente con registros. Los motivos principales más frecuentes de consulta fueron los siguientes: adecuación del esfuerzo terapéutico (46/42,6 %), compromiso neurológico grave (15/13,9 %), calidad de vida del paciente (11/10,2 %), conflictos entre el paciente, la familia y el sistema de salud (7/6,5 %), y rechazo del tratamiento por la familia (6/5,6 %). Se hallaron niveles altos de satisfacción (> 95 %) y niveles moderados de factibilidad (> 74 %) y efectividad (> 85 %). Solo en 50/108 casos (46,3 %) quedó registro en la historia clínica de la consulta al CEC y el 44 % de los profesionales opinó que la consulta tuvo un impacto positivo en la familia y en el paciente. Conclusiones. Los resultados contribuyeron a descubrir oportunidades de mejora, especialmente en la documentación y en la comunicación en el proceso de consulta.

Introduction. A clinical ethics committee (CEC) has educational, regulatory, advisory, mediation, and reflexive functions. As any health care service, the consults with the CEC should be subjected to review and quality improvement. The study objectives were to assess the feasibility, effectiveness, and satisfaction with the bioethical recommendations made by the CEC and assess their impact on the treating team and the patient's family. Population and methods. Descriptive, retrospective, qualitative, and quantitative study of clinical cases submitted to the hospital's CEC between January 1 st, 2013 and December 31, 2017 using data from the CEC minute book, medical records, registries from the Office for Remote Communication, and semi-structured interviews with health care team members. Results. A total of 108 cases (106 patients) were analyzed: 73 cases with survey and registries and 35 with registries only. The main most frequent reasons for consultation were adequacy of therapeutic effort (46/42.6%), severe neurological involvement (15/13.9%), patient's quality of life (11/10.2%), patient-family-health system conflict (7/6.5%), and family's refusal of treatment (6/5.6%). High levels of satisfaction (> 95%) and moderate levels of feasibility (> 74%) and effectiveness (> 85%) were observed. In only 50/108 cases (46.3%), the consultation with the CEC was registered in the medical record, 44% of health care providers stated that the consultation had a positive impact on the patient and their family. Conclusions. Results helped to establish improvement opportunities, especially in terms of documentation and communication in the consultation process.

Feasibility, effectiveness, and satisfaction achieved by the transdisciplinary intervention of a clinical-hospital ethics committee. A qualitative and quantitative study. / Factibilidad, eficacia y satisfacción lograda por la intervención transdisciplinaria de un comité de ética clínico-hospitalario. Un estudio cualicuantitativo.

INTRODUCTION: A clinical ethics committee (CEC) has educational, regulatory, advisory, mediation, and reflexive functions. As any health care service, the consults with the CEC should be subjected to review and quality improvement. The study objectives were to assess the feasibility, effectiveness, and satisfaction with the bioethical recommendations made by the CEC and assess their impact on the treating team and the patient's family. POPULATION AND METHODS: Descriptive, retrospective, qualitative, and quantitative study of clinical cases submitted to the hospital's CEC between January 1st, 2013 and December 31st, 2017 using data from the CEC minute book, medical records, registries from the Office for Remote Communication, and semi-structured interviews with health care team members. RESULTS: A total of 108 cases (106 patients) were analyzed: 73 cases with survey and registries and 35 with registries only. The main most frequent reasons for consultation were adequacy of therapeutic effort (46/42.6%), severe neurological involvement (15/13.9%), patient's quality of life (11/10.2%), patient-family-health system conflict (7/6.5%), and family's refusal of treatment (6/5.6%). High levels of satisfaction (> 95%) and moderate levels of feasibility (> 74%) and effectiveness (> 85%) were observed. In only 50/108 cases (46.3%), the consultation with the CEC was registered in the medical record, 44% of health care providers stated that the consultation had a positive impact on the patient and their family. CONCLUSIONS: Results helped to establish improvement opportunities, especially in terms of documentation and communication in the consultation process.

Introducción. Las funciones del Comité de Ética Clínica (CEC) son educativas, normativas, consultivas, mediadoras y reflexivas. Como cualquier servicio de salud, las consultas de casos a un CEC deben ser sujetas a revisión y mejora de la calidad. Los objetivos fueron evaluar la factibilidad, la efectividad y la satisfacción de las recomendaciones ético-asistenciales dadas por el CEC, y evaluar su impacto en el equipo tratante y en la familia. Población y métodos. Estudio descriptivo, retrospectivo, cualicuantitativo, de casos clínicos presentados en el Comité de Ética Clínica del hospital desde el 1 de enero de 2013 hasta el 31 de diciembre de 2017, según datos del libro de actas, historias clínicas, registros de la Oficina de Comunicación a Distancia y entrevistas semiestructuradas al equipo de salud. Resultados. Se analizaron 108 casos (106 pacientes), 73 casos con encuesta y registros, y 35 solamente con registros. Los motivos principales más frecuentes de consulta fueron los siguientes: adecuación del esfuerzo terapéutico (46/42,6 %), compromiso neurológico grave (15/13,9 %), calidad de vida del paciente (11/10,2 %), conflictos entre el paciente, la familia y el sistema de salud (7/6,5 %), y rechazo del tratamiento por la familia (6/5,6 %). Se hallaron niveles altos de satisfacción (> 95 %) y niveles moderados de factibilidad (> 74 %) y efectividad (> 85 %). Solo en 50/108 casos (46,3 %) quedó registro en la historia clínica de la consulta al CEC y el 44 % de los profesionales opinó que la consulta tuvo un impacto positivo en la familia y en el paciente. Conclusiones. Los resultados contribuyeron a descubrir oportunidades de mejora, especialmente en la documentación y en la comunicación en el proceso de consulta.

Series de Pediatría Garrahan. El adolescente en el consultorio del pediatra / Garrahan Pediatrics Series. The adolescent in the pediatrician's office

La adolescencia es un período de cambios dinámicos y profundos y representa, para el pediatra, desafíos particulares. En este nuevo volumen se han seleccionado temas específicos con el fin de actuailizar el conocimiento y transmitir pautas de abordaje desde una mirada interdisciplinaria. Entre sus aspectos sobresalientes se incluyen: El estudio de temas de interés especial como el abordaje del adolescente en la consulta de salud mental, los marcos legales vinculados al ejercicio de los derechos individuales, la sexualidad incorporando los aspectos de género y diversidad, así como las problemáticas relacionadas con el embarazo, la anticoncepción y las enfermedades de transmisión sexual en esta etapa de la vida. También se incluyen capítulos sobre el consumo problemático de sustancias y el impacto de las enfermedades crónicas en adolescentes. El enfoque práctico y la discusión de casos clínicos ubicando al pediatra en un papel central como coordinador de la atención interdisciplinaria y la inclusión en cada capítulo de aspectos clave y lecturas recomendadas. Una obra actualizada que aporta información científica y la experiencia de los profesionales del Hospital Garrahan dedicada a todos los miembros del equipo de salud que atienden y cuidan adolescentes dondequiera que trabajen al servicio de la salud infantil.

Quality of life and patient satisfaction in bracing treatment of adolescent idiopathic scoliosis.

BACKGROUND: Bracing is used as a valid non-surgical treatment for adolescent idiopathic scoliosis (AIS) to avoid progression of the deformity and thereby surgery. The effect of bracing treatment on quality of life of patients with AIS has been a topic of interest in the international literature. The aim of this study was to evaluate the quality of life and patient satisfaction during bracing treatment for AIS of a pediatric hospital. MATERIAL AND METHOD: We assessed a total of 43 non-consecutive female patients (mean age at questionnaire, 13 years and 1 month and 10 years and 8 months to 14 years and 5 months; mean period of usage of brace, 1 year and 7 months), with adolescent idiopathic scoliosis (AIS), older than 10 years of age until skeletal maturity, with a Risser sign less than 3 and scoliosis between 20 and 45°, treated with thoracolumbosacral orthosis (TLSO) for a period longer than 6 months, and without other comorbidities or previous surgeries, were evaluated. The patients were administered a previously validated to Spanish questionnaire on quality of life (Brace Questionnaire (BrQ); Grivas TB et al.). BrQ is a validated tool and is considered a disease-specific instrument; its score ranges from 20 to 100 points, and higher BrQ scores are associated with better quality of life. RESULTS: The patients reported using the brace for a mean of 17.6 h daily and for a mean period of 1 year and 7 months at the time of the study. Overall, 72% of the study population reported to be in some way psychologically affected by the brace wearing, 56% felt their basic motor activities were affected, 54% felt socialization with their environment was affected, 46% considered their quality of life deteriorated due to pain, and 40% reported conflicts in the school environment. CONCLUSION: Patients with AIS treated with bracing reported a negative impact (53.5% overall) on quality of life and treatment satisfaction in terms of psychological, motor, social, and school environment aspects. An interdisciplinary approach would be important for the integrated psychosocial care of these patients.

Divulgación de información sobre los pacientes del hospital: ¿Derecho o responsabilidad? / Dissemination of hospital patient data: A right or responsibility?

Los medios de comunicación son un importante actor en toda sociedad democrática. Su rol social en las cuestiones de salud, y en particular en lo relacionado con los derechos de la infancia, merece ser destacado. La manera en que se describen los niños, niñas y adolescentes en los medios tiene un impacto profundo en la actitud de la sociedad hacia la niñez. Un manejo adecuado de la imagen de la infancia que mostramos en los medios de comunicación es vital para contribuir a redimensionar la situación de los niños, niñas y adolescentes en la sociedad y valorar sus identidades, sus deseos y preferencias, sus miedos y sus derechos. Como hospital pediátrico nos cabe una gran responsabilidad respecto a lo que comunicamos, ya que los niños, niñas y adolescentes y sus familias son un grupo extremadamente vulnerable, más aún cuando son pacientes y en razón de todo ello depositan su confianza en recibir una especial protección, eminentemente asistencial y que debe ser inseparable de los aspectos jurídicos y éticos. Hay que considerar la diferencia del uso de la información con fines científicos y docentes, de la que puede ser utilizada como nota periodística, ya que van destinadas a grupos diferentes y persiguen objetivos distintos (AU)

The media is an important actor in the democratic society. Their role in health issues, particularly those related to children's rights, is outstanding. The way boys and girls and adolescents are described in the media has a profound impact on the attitude of society towards children. Adequate management of the image of childhood we show in the media is a vital contribution to the redimensioning of the situation of boys and girls, and adolescents in society respecting their identities, wishes, fears, and rights. As a pediatric hospital we have a great responsibility regarding what we communicate because boys and girls and adolescents as well as their families are an extremely vulnerable group, even more so when they are patients and consequently deposit their trust in us to receive special protection and care, which should be inseparable from judicial and ethical aspects. Data use for scientific and teaching aims should be distinguished from information used in the media, as target groups and aims pursued are different (AU)

[Levomepromazine as adjuvant sedation in a pediatric intensive care unit]. / Levomepromazina como coadyuvante de sedación en la unidad de cuidados intensivos pediátricos.

INTRODUCTION: Sedation of patients in pediatric ICU extubated and in weaning of mechanic ventilation is diffcult under regular sedation, because of the tolerance and/or abstinence generated by its sustained use. The objective of this study is to describe the use of Levomepromazine as sedative coadjuvant in these patients. POPULATION AND METHODS: Observational and longitudinal study in intensive care from Juan P. Garrahan Pediatric Hospital. Patients older than 2 years were included, extubated and in weaning of mechanic ventilation with requirements of additional sedation. The level of basal sedation and post-intervention (levomepromazine 0.5 mg/kg every 8 hours) were evaluated with Ramsay and Khalil scales. Doses of regular sedatives were compared before and after the indication. It was considered positive an increase of 1 in the scales, or a decrease of 20% in the regular sedatives doses. RESULTS: 36 patients, medium age of 8,5 years, average doses of levomepromazine 0.38 mg/kg. 97% showed positive result. The regular sedative doses were reduced more than 20% after the intervention. No adverse effects or deceased were registered.

[Experience of an Ethics Committee of a pediatric reference hospital]. / Experiencia del Comité de Ética asistencial de un hospital pediátrico de referencia.

Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospital's Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committee's career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.

Experiencia del Comité de Etica asistencial de un hospital pediátrico de referencia. / [Experience of an Ethics Committee of a pediatric reference hospital].

Since 1960, there has been a growing interest in the complexity of the ethical problems posed by medical practice. Ever since then, many ethical theories have attempted to support bioethics, setting the necessary grounds for decision making process. The aim of this article is to briefly present the history and working of a pediatric hospitals Assistance Ethics Committee, as well as its evolution from the very beginning. Throughout the Committees career, progressive changes were made in the way of working. During its first years, the fulfillment of certain formalities was demanded when presenting patients, but this was modified overtime towards a less rigid and more reflexive and pluralistic presentation. Regarding our Ethics Committee, deliberation is the main and most valuable tool in the search for the best option when dealing with harsh and problematic cases that are presented.