RESUMEN
INTRODUCTION: This prospective multicentre study evaluates the impact of Palliative Care Unit (PCU) intervention (Experimental Group, EG), during autologous hematopoietic stem cell transplantation (AHSCT) on quality of life (QoL), symptom control and healthcare resource use compared to standard practice (Control Group, CG). We used validated scales on Days 0 (stem cell infusion), + 7 (bone marrow aplasia, acute symptoms) and + 21 (aplasia recovery). RESULTS: In 40 patients (20 EG/ 20 CG: 45%/25% female, median age 57.5/59), QoL differed significantly at Day + 7 (EG: median 0.50; CG: -63.00; p < 0.001) and Day + 21 (EG: -2.00; CG: -129.00; p < 0.001). On Day 0, mean FACT-BMT scores were CG/EG: 131/ 89.35, reflecting the pre-transplant intervention of the PCU in EG patients. For pain (EG median 0.00, CG median 2.50; p = 0.01), 45% EG patients used opioids on day 0 (mean 38.5 mg morphine/day/patient). Reduced pain control impacted nutritional support (parenteral nutrition 45% CG, 5% EG; p = 0.08). Hospitalisation duration was longer in CG (median 18.5; EG median 13.00; p < 0.001). Despite the short follow-up and small sample size, PCU and HD collaboration improves QoL and symptom management during acute AHSCT, evident through pain control, analgesia management, reduced parenteral nutrition need and shorter hospital stays.
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Trasplante de Médula Ósea , Estudios de Factibilidad , Cuidados Paliativos , Calidad de Vida , Trasplante Autólogo , Humanos , Femenino , Masculino , Persona de Mediana Edad , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudios Prospectivos , Trasplante de Médula Ósea/métodos , Trasplante de Médula Ósea/normas , Calidad de Vida/psicología , Trasplante Autólogo/métodos , Adulto , Anciano , Manejo del Dolor/métodos , Manejo del Dolor/normasRESUMEN
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.
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Indicadores de Salud , Servicios de Atención de Salud a Domicilio , Cuidados Paliativos/normas , Enfermedad Pulmonar Obstructiva Crónica/enfermería , Cuidadores/normas , Cuidadores/provisión & distribución , Comunicación , Costo de Enfermedad , Humanos , Cooperación del Paciente/estadística & datos numéricos , Satisfacción del Paciente , Pronóstico , Estudios Prospectivos , Enfermedad Pulmonar Obstructiva Crónica/mortalidad , Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Calidad de la Atención de Salud/normas , Calidad de la Atención de Salud/estadística & datos numéricos , Calidad de Vida , Apoyo Social , España , Encuestas y CuestionariosRESUMEN
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.