Seguimiento de pacientes con esclerosis lateral amiotrófica por un equipo de cuidados paliativos domiciliario / Follow-up of patients with amyotrophic lateral sclerosis by a home palliative care team

Antecedentes y objetivo: Pocos estudios describen el final de la vida de los pacientes con esclerosis lateral amiotrófica (ELA). Nuestro objetivo principal fue describir la trayectoria final de vidade pacientes con ELA seguidos por un equipo de soporte cuidados paliativos domiciliario (equipode soporte de atención paliativa domiciliaria [ESAPD]). El objetivo secundario fue examinar losfactores asociados con el lugar de muerte y supervivencia.Ámbito y diseño: Estudio observacional retrospectivo en una cohorte de pacientes diagnosticadoscon ELA y seguido por un ESAPD. Se analizaron variables sociodemográficas, la supervivenciadesde el inicio de la ventilación, supervivencia desde el inicio de la gastrostomía, consumode recursos sanitarios, uso de opioides, planificación anticipada de decisiones (PAD), lugar demuerte y causa de muerte.Resultados: Se incluyeron 60 pacientes. Los principales síntomas fueron disnea y disfagia. LaPAD fue trabajada en el 83 % de los pacientes. Cincuenta y dos (83 %) pacientes murieron endomicilio o en una unidad de cuidados paliativos. Se requirieron opioides durante las últimas24 h en el 47 % de los pacientes. La causa de muerte fue por insuficiencia respiratoria, infección respiratoria, muerte durante el sueño y rechazo del tratamiento para el 47, 16, 15 y 15 %respectivamente. El 25 % requirieron sedación paliativa. La supervivencia media desde el iniciode la alimentación enteral, la ventilación mecánica no invasiva y la ventilación invasiva fue de 7, 13 y 12 meses, respectivamente. El número promedio de visitas del ESADP fue de 14 (DE:12). Haber recibido información y no haber sido ingresado en el hospital durante el periodode estudio se asoció con un aumento significativo de la probabilidad de morir en el domicilio.Conclusiones: La causa de muerte más frecuente fue la insuficiencia respiratoria, que en la mayoría de los casos requirió tratamiento con opioides. Uno de cada 4 pacientes requirió sedación paliativa. (AU)

Background and objectives: Few studies have reported end of life for patients with amyotrophiclateral sclerosis (ALS). Our main objective was to describe the end-of-life trajectory of patientsmonitored by a palliative home care team (PHTC). The secondary objective was to examinefactors associated with place of death and survival.Setting and design: A retrospective, observational study in a cohort of patients diagnosed withALS followed by a PHCT. Sociodemographic variables, survival from start of ventilation andgastrostomy, use of health resources, opioid use, care planning, place of death, and cause ofdeath were analyzed.Results: Sixty patients were included. Main symptoms included dyspnea and dysphagia. Advancecare planning was possible for 83 %. Fifty-two (83 %) died at home or in a palliative care unit.The cause of death was respiratory failure, respiratory infection, death during sleep, and refusalof treatment for 47 %, 16 %, 15 % and 15 %, respectively. Opioids were required in 47 %, and 25 %needed palliative sedation. Average survival from start of enteral feeding, noninvasive mechanical ventilation, and invasive ventilation was 7, 13 and 12 months, respectively. Average of visitswas 14 (SD 12). Having received informal support and not having been admitted to hospitalduring the study period were associated with a significantly increased rate of dying at home.Conclusions: The most frequent cause of death was respiratory failure, most cases requiredopioids, and one out of every four needed palliative sedation. Most died at home. (AU)

Impacto de la pandemia por COVID-19 en pacientes con necesidades paliativas atendidos por un equipo de soporte de atención domiciliaria / Impact of the COVID-19 pandemic on patients with palliative needs attended by a home care support team

Objetivo: Analizar si existen diferencias en la actividad de un Equipo de Soporte de Atención Paliativa Domiciliaria (ESAPD) entre el periodo del Estado de Alarma de 2020 y el último trimestre de 2019 y estimar la prevalencia de infección por COVID-19, la mortalidad y el lugar de fallecimiento de los pacientes.Método: Estudio observacional descriptivo con 2 cortes transversales: periodo de Estado de Alarma de 2020 (14 marzo-21 junio) y el último trimestre de 2019 (14 septiembre-21 diciembre). Se incluyeron los pacientes en seguimiento por un ESAPD de la Comunidad de Madrid al inicio de cada periodo y aquellos que entraron como pacientes nuevos durante los periodos de estudio.Resultados: En el trimestre de 2019 se atendieron 271 pacientes, 146 (53,87 %) eran pacientes nuevos. En periodo de Estado de Alarma 303 pacientes recibieron atención, 173 (57,10 %) eran nuevos, 238 (78,55 %) precisaron atención domiciliaria y 65 (21,45 %) atención telefónica. En 2019, la media de visitas/paciente fue 3,17 ± 2,42 frente a 2,73 ± 2,41 en Estado Alarma (p = 0,02). Los pacientes considerados caso COVID-19 fueron 57, estimándose una prevalencia de 18,81 % (IC 95 %: 14,78-23,64 %). Los pacientes COVID-19 era más probable que viviesen en residencia (OR: 8,16; IC 95 %: 4,22-15,79) y que tuvieran patología no oncológica (OR; 2,38; IC 95 %: 1,31-4,31). Los pacientes COVID-19 presentaron mayor mortalidad que los no COVID (OR: 2,07; IC 95 %: 1,13-3,77). En cuanto al lugar de fallecimiento de los pacientes COVID-19, fue más frecuente que no ocurriese en el domicilio (OR: 6,29; IC95 %: 2,55-15,51).Conclusiones: Durante el periodo de Estado de Alarma aumentó el número de pacientes atendidos por ESAPD, la mayoría precisó atención domiciliaria y disminuyeron las visitas por paciente comparado con un periodo prepandemia. En el grupo de pacientes COVID-19 predominó la enfermedad no oncológica, se produjo mayor mortalidad y más fallecimientos en residencia y menos en domicilio. (AU)

Objective: To analyze whether there were any differences in the activity of a Home Palliative Care Team between the State of Alarm period of 2020 and the last quarter of 2019, and to estimate the prevalence of COVID-19 infection, mortality, and place of death.Method: A cross-sectional, observational study: from the 2020 State of Alarm period (14 March-21 June) to the last quarter of 2019 (14 September-21 December). Patients in follow-up by a home palliative care team in the Community of Madrid at the beginning of each period, and those who entered as new patients during the study periods were included.Results: In the 2019 quarter 271 patients were seen, 146 (53.87 %) were new patients. In the 2020 State of Alarm period 303 patients received care, 173 (57.10 %) were new, 238 (78.55 %) required home care, and 65 (21.45 %) required telephone care. In 2019, the mean number of visits/patient was 3.17 ± 2.42 versus 2.73 ± 2.41 during the State of Alarm period (p = 0.02). There were 57 patients considered COVID-19 cases, with an estimated prevalence of 18.81 % (IC 95 %: 14.78-23.64 %). COVID-19 patients were more likely to live in nursing homes (OR: 8.16, 95 % CI: 4.22-15.79) and to have non-oncological disease (OR: 2.38, 95 % CI: 1.31-4.31). COVID-19 patients had a higher mortality rate than non-COVID-19 patients (OR: 2.07, 95 % CI: 1.13-3.77). Regarding the place fo death of COVID-19 patients, home was more common than elsewhere (OR: 6.29, 95 % CI: 2.55-15.51).Conclusions: During the State of Alarm period the number of patients cared for by a Home Palliative Care Team increased, the majority required home care, and visits per patient decreased compared to the pre-pandemic period. In the COVID-19 patient group non-oncological disease predominated, with higher mortality and more deaths occurring at nursing homes and fewer at home. (AU)

Breaking Barriers: Prospective Study of a Cohort of Advanced Chronic Obstructive Pulmonary Disease Patients To Describe Their Survival and End-of-Life Palliative Care Requirements.

BACKGROUND AND AIM: Consensus has been reached on the need to integrate palliative care in the follow-up examinations of chronic obstructive pulmonary disease (COPD) patients. We analyzed the survival from the initiation of follow-up by a palliative home care team (PHCT) and described the needs and end-of-life process. SETTING AND DESIGN: This study was a prospective observational cohort study of advanced COPD patients referred to a PHCT. Sociodemographic variables, survival from the start date of follow-up using the Kaplan-Meier model, health resource consumption, perceived quality of life, main symptomatology, opioid use, and advanced care planning (ACP) were analyzed. RESULTS: Sixty patients were included. The median survival was 8.3 months. Forty-two patients died at the end of the study (85% at home or in palliative care units). The most frequent cause of death was respiratory failure in 39 patients (93%), with 29 of these patients requiring sedation (69%). Dyspnea at rest, with an average of 5 (standard deviation [SD] 2) points, was the main symptom. Fifty-five patients (91%) required opioids for symptom control. The median score in the St. George's Respiratory Questionnaire was 72 (SD 13). The mean number of visits by the home team was 7 (SD 6.5). The mean number of admissions during the monitoring period was 1.5 (SD 0.15). CONCLUSIONS: The characteristics of the cohort appear suitable for a PHCT. The follow-up care provided by our multidisciplinary unit decreased the number of hospitalizations, favored the development of ACP, and enabled death at home or in palliative care units.

Programa centralizado de formación en Cuidados Paliativos. Coordinación Regional de la Comunidad de Madrid 2010-2015 / Regionally coordinated centralised palliative care training program by the Community of Madrid. 2010-2015

En 2010 con el Plan Estratégico de Cuidados Paliativos nace La Red de Formación, integrada por profesionales de los distintos equipos específicos de Cuidados Paliativos. La formación es parte integral del desarrollo de los Cuidados Paliativos y ha de considerarse una prioridad para impulsar la excelencia de los servicios. Para abordar los Cuidados Paliativos, la formación debe alcanzar a un amplio colectivo de profesionales de distintas disciplinas (Medicina, Enfermería, Psicología Clínica, Trabajo Social, entre otros) y en diferentes niveles formativos, con la finalidad de dotarnos de profesionales «competentes» para resolver problemas complejos siguiendo los principios fundacionales de la Dra. Cicely Saunders. Para dar respuesta a esta necesidad, se requieren distintos niveles de formación, identificados como niveles básico, intermedio, avanzado y experto. Así pues, se ha ideado un plan de formación basado en cuatro escalones o niveles que se han de ir adquiriendo y superando hasta alcanzar el grado de experto. Nuestros objetivos principales desde la Coordinación Regional de la Comunidad de Madrid, son ofertar y promover una formación de calidad para todos los profesionales implicados en el cuidado de pacientes susceptibles de recibir Cuidados Paliativos así como definir las competencias y asegurar la capacitación en conocimientos, habilidades y actitudes de los distintos colectivos profesionales implicados. Al mismo tiempo, contribuir a la formación de las personas atendidas y de sus cuidadores para desarrollar su capacidad de autocuidado

Madrid Palliative Care Teaching and Training Network consists of professionals from specialist palliative care teams. It was created in 2010 within the Regional Strategic Plan of Palliative Care. Training is an integral part of the development of palliative care and must be given priority to promote the excellence of the services. When addressing palliative care, training must reach a wide range of professionals from various disciplines (including, among others, doctors, nurses, nursing assistants, psychologists, and social workers), as well as different training levels, with the aim of providing skilful and competent professionals able to respond to complex needs, following the Dame Cicely Saunders foundational principles. Different levels of training are required, which have been identified by us as basic, intermediate, advanced, and expert. Thus a training plan needs to be based on the four steps or levels that need to be completed until the expert level. The main goals of the Regional Coordination of Palliative Care are to offer and promote quality training for all the professionals involved in the care of patients with needs of varying degrees, as well as to define the competencies and ensure the training in knowledge, skills and attitudes of the various professional groups involved. At the same time, to contribute to the training of patients and carers in order to develop self-care abilities

Atención al final de la vida en los pacientes con fibrosis pulmonar idiopática / End of life care in pulmonary fibrosis

OBJETIVOS: Describir el final de vida de los pacientes con fibrosis pulmonar idiopática (FPI) desde la experiencia del seguimiento de un Equipo de Soporte de Atención Paliativa Domiciliario. (ESAPD). METODOLOGÍA: Estudio descriptivo retrospectivo de pacientes con FPI atendidos por un ESAPD en los años 2011, 2012 y 2013. Analizamos: variables sociodemográficas, nivel de información, situación funcional, tratamientos recibidos, control de síntomas, situación de últimos días, lugar de fallecimiento y carga asistencial. Análisis de datos con SPSS®. RESULTADOS: Se atendieron 6 pacientes con FPI. Edad media de 74 años, cuatro hombres. Al inicio: Barthel de 50 (DS 30) y palliative performance score de 50 (DS 4), con un índice de comorbilidad de Charlson de 1,5 (DS 1,2). Los síntomas más importantes durante el seguimiento fueron la disnea de mínimos esfuerzos (69% al inicio, 100% en la última semana) y los síntomas de hipercapnia (16% al inicio y 50% en la última semana). Cinco pacientes tenían información diagnóstica y pronóstica. Consumían una media de 10 fármacos. Un 66% fármacos inhalados y un 100% esteroides, opioides y OCD con sistema de alto flujo. Cuatro pacientes precisaron vía subcutánea y administración de morfina (dosis media 25 mg/día). El lugar de fallecimiento fue el domicilio (50%) y Unidades de Cuidados Paliativos (50%). La mediana de días de seguimiento por ESAPD fueron 18 (4-210), con una media de 5 (DS 4) visitas por ESAPD. La mediana de supervivencia desde el diagnóstico fue de 11,5 meses (3-60). CONCLUSIONES: Los pacientes con FPI presentan una importante disnea, muy limitante que progresa hasta hacerse de reposo, lo que justificaría un seguimiento domiciliario estrecho por un ESAPD

AIM: To describe the clinical course of patients with advanced idiopathic pulmonary fibrosis (IPF) followed up by a Palliative Home Care Supportive Team (PHCST). METHODS: Observational, retrospective study of patients with IPF who were followed up by a PHCST during 2011,2012 and 2013. We analyzed: demographic characteristics, information level, performance status,, treatments, symptom control, last day's situation, place of death, and care burden. Data were analyzed using SPSS®. RESULTS: A total of 6 patients were analyzed, with a mean age of 74, 4 males. At baseline: Barthel score 50 (SD 30), palliative performance score (PPS) 50 (SD 4), and Charlson Comorbidity Index 1.5 (SD 1.2). The main problems reported by patients were dyspnea with minimal activity (69% at baseline, 100% in the last week) and clinical signs of hypercapnia (16% at baseline, 50% in the last week). Five patients were informed about diagnosis and the prognosis. Patients were taking an average of 10 drugs, with 66% used inhalation drugs, and 100% used corticosteroids, opioids and high flow oxygen delivery. Four patients used subcutaneous route and morphine administration (mean dose of 25 mg/day). The place of death was at home (50%), and in a palliative care unit (50%). The median PHCST follow-up time was 18 days (4-210) with a mean of 5 (SD 4) PHCST visits during this period. The median survival time between diagnosis and death was 11.5 months (3-60). CONCLUSIONS: Patients with IPF exhibit a very important dyspnea, very limiting that progresses even at rest, which would justify a narrow home monitoring by PHCST

Atención enfermera a pacientes con fibrosis pulmonar idiopática en fase avanzada / Nursing care for patients with advanced idiopathic pulmonary fibrosis

OBJETIVOS: describir las características de pacientes con fibrosis pulmonar idiopática (FPI) en fase avanzada y analizar los principales diagnósticos de Enfermería desde la experiencia de un Equipo de Soporte Paliativo Domiciliario (ESAPD).MÉTODO: estudio descriptivo transversal de pacientes con FPI atendidos por un ESAPD de Madrid, de 2011 a 2015. Se analizó: edad, sexo, situación funcional (índice de Barthel y la escala Palliative Performance Scale), número de fármacos, oxigenoterapia, aspectos sociales, días de seguimiento, número de visitas y lugar de éxitus. Se analizaron los diagnósticos de Enfermería según taxonomía NANDA. RESULTADOS: se evaluaron un total de 1.920 pacientes. 18(0,93%) fueron incluidos por presentar FPI. La edad media era 75,5años, un 55,6% eran hombres. Tenían un índice de Barthel de 50, un Palliative Performance Scale de 50, consumían una media de10 fármacos y todos utilizaron opioides para la disnea. Un 94,4%utilizaba oxigenoterapia a alto flujo. En un 55,5% el cuidador principal eran los hijos. Los diagnósticos de Enfermería "Patrón respiratorio ineficaz", "Riesgo de infección" y "Déficit de autocuidado: baño" estaban presentes en todos los pacientes. La mediana de días de seguimiento fueron 31 días; un 55,6% fue derivado en el último mes de vida. Al finalizar el estudio todos los pacientes habían fallecido, siendo el domicilio el lugar de preferencia para el éxitus (61,1%).CONCLUSIONES: los pacientes con FPI avanzada presentan disnea, deterioro funcional moderado y necesidad de ayuda en los autocuidados. La derivación a ESAPD fue tardía. Más de la mitad de los pacientes fallecieron en el domicilio

OBJECTIVES: to describe the characteristics of patients with Idiopathic Pulmonary Fibrosis (IPF) in advanced stage, and to analyze the main Nursing diagnoses based on the experience of a Team for Palliative Care at Home (TPCH).METHOD: a transversal descriptive study on IPF patients managed by a TPCH in Madrid, from 2011 to 2015. The following were analyzed: age, gender, performance status (Barthel Index and the Palliative Performance Scale), number of drugs, oxygen therapy, social aspects, follow-up days, number of visits, and place of death. The Nursing diagnoses were analyzed according to the NANDA taxonomy. RESULTS: in total, 1,920 patients were assessed; 18 of them(0.93%) were included because they presented IPF. Their mean age was 75.5 years; 55.6% were male. Their Barthel Index score was 50, and their Palliative Performance Scale score was 50. They took a mean number of 10 drugs, and they all used opioids for their dyspnea. A 94.4% of these patients were using high flow oxygen therapy. The main caregivers were patients' children, in 55.5% of cases. The following Nursing diagnoses were present in all patients: "Inefficient respiratory pattern", "Risk of infection", and "Self-care deficit: bathing". The median of follow-up days was 31;55.6% of patients were referred in their last month of life. When the study was completed, all patients had died, and their home was the preferred place for exitus (61.1%). CONCLUSIONS: patients with advanced IFP present dyspnea, moderate functional deterioration, and they require help for self care. There was a late referral to TPCH. More than half of patients died at home

HOLD study (Home care Obstructive Lung Disease): natural history of patients with advanced COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fourth cause of death in western countries. Its final stage has clearly been forgotten by medical research in recent years. There exists consensus regarding the need to integrate palliative care in assisting these patients, but the difficulty in establishing a prognosis for the disease, establishing limits for life support measures, the lack of information about the disease's natural course and ignorance as to the most effective health-care structure for these patients' palliative treatment may be responsible for their late inclusion or non-inclusion in specific programmes. The main purpose of this work is to find out the natural background of patients with stage IV COPD and the main prognostic factors that influence these patients' survival. METHODS/DESIGN: Prospective observational study of a home patient cohort with stage IV COPD sent from Neumology consultations and Palliative Care Unit in La Paz Hospital in Madrid and Primary Care Health Centres in the area to the palliative care home support team. The goal is to study socio-demographic variables, prognosis, nutritional status, use of health resources, perceived quality of life, functionality, main symptomatology, use and effectiveness of opioids, adherence to treatment, prognostic information regarding the disease, information given by professionals, advance directives, social backup requirements and overburden level of the main caregiver. DISCUSSION: The HOLD study is a project aimed at finding out the prognostic factors and evolution of the disease COPD in its most advanced stage. The final goal is to improve the health and quality of life, in a personalised, integral way up to end of life and explore and foster communication with patients, as well as their participation and collaboration in decision-taking. The HOLD study can help us better understand what these patients' real palliative and care needs are, in order to more efficiently organise their treatment at end of life.

Atención enfermera a pacientes con enfermedades neurodegenerativas en fase avanzada / Nursing care of patients with advanced stage neurodegenerative diseases

Objetivos: describir el perfil de los pacientes con enfermedades neurodegenerativas (END) en fase avanzada en un equipo de atención domiciliaria.Analizar los principales problemas de salud y conocer el lugar de éxitus.Material y métodos: estudio descriptivo transversal de enfermos atendidos en un Equipo de Soporte de Atención Domiciliaria (ESAD) del Área 5 de Madrid, en el período de 2001 a 2008. Se analizó: edad, sexo, diagnóstico de enfermedad neurológica, procedencia de la derivación, días de seguimiento, número de visitas, aspectos sociales, índice de Barthel,número de fármacos, problemas detectados y lugar de éxitus.Resultados: se evaluaron un total de 2.738 pacientes. 25 (0,91%) fueron incluidos por presentar una END en fase avanzada. La edad media erade 62,2 años, un 60% eran mujeres. Un 64% estaba diagnosticado de esclerosis lateral amiotrófica. El seguimiento se estimó en 98,2 días por paciente con una media de 8,7 visitas. Tenían un índice de Barthel en primera visita de 22,4, siendo el cónyuge el cuidador principal. Al finalizar el estudio, 22 pacientes habían fallecido, siendo el domicilio el lugar de preferencia para el éxitus (72,7%). Los problemas más frecuentes durante el seguimiento fueron disfagia (92%) y disnea (76%).Conclusiones: el perfil del paciente con END es el de una mujer de mediana edad con deterioro funcional severo cuyo cuidador principal es el cónyuge.Los principales problemas detectados fueron disfagia y disnea. Aproximadamente,tres de cada cuatro pacientes fallecieron en el domicilio (AU)

Objectives: to describe the profile of patients with advanced stage neuro -degenerative diseases in a home care team. To analyse the primary health problems and to determine the place of death.Material and methods: cross-sectional descriptive study of patients seen in a Home Care Support Team (HCST) of Area 5 of Madrid, in thetime period between 2001 and 2008. The following variables were analysed: age, sex, diagnosis of neurological disease, origin of the referral,follow-up days, number of visits, social aspects, Barthel’s index,number of drugs, detected problems and place of death.Results: a total of 2.738 patients were evaluated. 25 (0,91%) were included for presenting an advanced NDD. Mean age was 62,2% years,and 60% were women. 64% were diagnosed with amyotrophic lateral sclerosis.The follow-up was estimated to be 98,2 days per patient with amean of 8,7 visits. On the first visit patients’ Barthel index was 22,4, thespouse being the primary caregiver. By the end of the study, 22 patients had died, the home being the place of preference for exitus (72,7%). Themost frequent problems during follow-up were dysphagia (92%) and dyspnoea (76%).Conclusions: the profile of the patient with NDD is a middle-aged woman with severe functional deterioration whose main caregiver is her spouse.The main problems detected were dysphagia and dyspnoea. Approximately three of every four patients passed away in their home (AU)