Planificación anticipada del cuidado y toma de decisiones al final de la vida en pediatría: Una revisión de la literatura

Introducción:A mediados de la década de 1990 surgió en Estados Unidos un proceso denominado “Advance Care Planning”, o planificación anticipada del cuidado cuyo objetivo era el reconocimiento y el respeto a la autonomía de la persona, promoviendo la participación de ésta en la gestión de sus propios cuidados fundamentalmente en los momentos finales de su vida. Este estudio tiene como objetivo analizar el proceso de integración de la planificación anticipada del cuidado en pacientes pediátricos que reciben cuidados paliativos centrándose en los profesionales sanitarios, en concreto en la enfermería, así como en el paciente pediátrico y su familia.Metodología:Se efectuó una revisión de la literatura disponible en las bases de datos biomédicas más relevantes (Pubmed, Gale Academic OneFile, Academic Search, Medline, ScienceDirect) así el buscador Google Scholar y Alcorze, y se reportó siguiendo los criterios de la Declaración PRISMA. Los artículos se seleccionaron de acuerdo con unos criterios de selección predefinidos y se sometieron a una valoración de la calidad mediante las herramientas propuestas por el Joanna Briggs Institute.Resultados:Existe desacuerdo en la literatura acerca del mejor momento para iniciar las conversaciones sobre la planificación anticipada del cuidado. Mientras que algunos estudios demuestran que deben comenzarse lo antes posible, otros mantienen que deben iniciarse una vez que ya se ha formado una relación de confianza con la familia.Respecto a las barreras que encuentra el profesional sanitario para establecer la planificación anticipada del cuidado destacan la falta de preparación de los padres para abordar este tema, así como las expectativas poco realistas que a veces muestran. No obstante, también se describen una serie de facilitadores que mejoran la comunicación como las asociaciones en la toma de decisiones compartida y la necesidad de establecer un entorno de apoyo.Además, se llegó a la conclusión de que tanto el paciente como la familia deben estar en el centro de las discusiones sobre la planificación anticipada del cuidado.Conclusión:El verdadero desafío por parte de los profesionales sanitarios y en concreto el personal de enfermería, es valorar la experiencia de los padres y ayudarles a navegar a través de la transición a una confianza mutua en la que pueda iniciarse una planificación anticipada. Este proceso ha demostrado ser útil para disminuir los problemas bioéticos y mejorar la atención centrada en la persona.Palabras clave:"planificación anticipada"; "paciente pediátrico";" voluntades anticipadas"; "enfermería"; "cuidado paliativo".<br /

Epidemiological and clinical features of Kawasaki disease in Spain over 5 years and risk factors for aneurysm development. (2011-2016): KAWA-RACE study group

BACKGROUND: Kawasaki disease (KD) is an acute self-limited systemic vasculitis of unknown etiology affecting mainly children less than 5 years of age. Risk factors for cardiac involvement and resistance to treatment are insufficiently studied in non-Japanese children. OBJECTIVE: This study aimed to investigate the epidemiology, clinical features and risk factors for resistance to treatment and coronary artery lesions (CAL) in KD in Spain. METHODS: Retrospective study (May 2011-June 2016) of all patients less than 16 years of age diagnosed with KD included in KAWA-RACE network (84 Spanish hospitals). RESULTS: A total of 625 cases were analyzed, 63% were males, 79% under 5 year-olds and 16.8% younger than 12 months. On echocardiographic examination CAL were the most frequent findings (23%) being ectasia the most common (12%). Coronary aneurysms were diagnosed in 9.6%, reaching 20% in infants under 12 months (p 900,000 cells/mm3, maximum temperature 10 days and fever before treatment >/= 8 days as independent risk factors for developing coronary aneurysms. CONCLUSIONS: In our population, children under 12 months develop coronary aneurysms more frequently and children with KD with anemia and leukocytosis have high risk of cardiac involvement. Adding steroids early should be considered in those patients, especially if the treatment is not started before 8 days of fever. A score applicable to non-Japanese children able to predict the risk of aneurysm development and IVIG resistance is necessary

Evolution over Time of Ventilatory Management and Outcome of Patients with Neurologic Disease∗

OBJECTIVES: To describe the changes in ventilator management over time in patients with neurologic disease at ICU admission and to estimate factors associated with 28-day hospital mortality. DESIGN: Secondary analysis of three prospective, observational, multicenter studies. SETTING: Cohort studies conducted in 2004, 2010, and 2016. PATIENTS: Adult patients who received mechanical ventilation for more than 12 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Among the 20,929 patients enrolled, we included 4,152 (20%) mechanically ventilated patients due to different neurologic diseases. Hemorrhagic stroke and brain trauma were the most common pathologies associated with the need for mechanical ventilation. Although volume-cycled ventilation remained the preferred ventilation mode, there was a significant (p &lt; 0.001) increment in the use of pressure support ventilation. The proportion of patients receiving a protective lung ventilation strategy was increased over time: 47% in 2004, 63% in 2010, and 65% in 2016 (p &lt; 0.001), as well as the duration of protective ventilation strategies: 406 days per 1,000 mechanical ventilation days in 2004, 523 days per 1,000 mechanical ventilation days in 2010, and 585 days per 1,000 mechanical ventilation days in 2016 (p &lt; 0.001). There were no differences in the length of stay in the ICU, mortality in the ICU, and mortality in hospital from 2004 to 2016. Independent risk factors for 28-day mortality were age greater than 75 years, Simplified Acute Physiology Score II greater than 50, the occurrence of organ dysfunction within first 48 hours after brain injury, and specific neurologic diseases such as hemorrhagic stroke, ischemic stroke, and brain trauma. CONCLUSIONS: More lung-protective ventilatory strategies have been implemented over years in neurologic patients with no effect on pulmonary complications or on survival. We found several prognostic factors on mortality such as advanced age, the severity of the disease, organ dysfunctions, and the etiology of neurologic disease

Differential clinical characteristics and prognosis of intraventricular conduction defects in patients with chronic heart failure

Intraventricular conduction defects (IVCDs) can impair prognosis of heart failure (HF), but their specific impact is not well established. This study aimed to analyse the clinical profile and outcomes of HF patients with LBBB, right bundle branch block (RBBB), left anterior fascicular block (LAFB), and no IVCDs. Clinical variables and outcomes after a median follow-up of 21 months were analysed in 1762 patients with chronic HF and LBBB (n = 532), RBBB (n = 134), LAFB (n = 154), and no IVCDs (n = 942). LBBB was associated with more marked LV dilation, depressed LVEF, and mitral valve regurgitation. Patients with RBBB presented overt signs of congestive HF and depressed right ventricular motion. The LAFB group presented intermediate clinical characteristics, and patients with no IVCDs were more often women with less enlarged left ventricles and less depressed LVEF. Death occurred in 332 patients (interannual mortality = 10.8%): cardiovascular in 257, extravascular in 61, and of unknown origin in 14 patients. Cardiac death occurred in 230 (pump failure in 171 and sudden death in 59). An adjusted Cox model showed higher risk of cardiac death and pump failure death in the LBBB and RBBB than in the LAFB and the no IVCD groups. LBBB and RBBB are associated with different clinical profiles and both are independent predictors of increased risk of cardiac death in patients with HF. A more favourable prognosis was observed in patients with LAFB and in those free of IVCDs. Further research in HF patients with RBBB is warranted