62 research outputs found

    Las dimensiones de la calidad del servicio percibida en entornos virtuales de formación superior

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    L’aparició d’entorns virtuals d’aprenentatge (EVA) caracteritzats per l’ús de les tecnologies de la informació i la comunicació (TIC) en les diferents funcions institucionals bàsiques de l’ensenyament superior (docència, processos administratius, desenvolupament i distribució de materials, etc.) és un element característic del context educatiu actual. L’expansió de l’aprenentatge virtual i la competència que ha sorgit en aquest àmbit han fet que aparegui una preocupació creixent per la qualitat d’aquest servei. En aquest sentit, cal desenvolupar sistemes, models i escales que permetin obtenir mesures vàlides, fiables i consistents de la qualitat dels serveis educatius que s’ofereixen en EVA. Aquest és l’objectiu bàsic d’aquest treball, que, prenent com a punt de referència la literatura sobre qualitat de servei percebuda (QSP) i adoptant una perspectiva holística dels serveis formatius, presenta una escala model que permet mesurar la QSP en aquests entorns. Aquesta escala és composta per 24 ítems que se subsumeixen en quatre dimensions: docència (servei essencial), serveis facilitadors o administratius, serveis de suport i interfície de l’usuari.Virtual learning environments (VLEs) make intensive use of information and communication technologies (ICTs) to underpin the delivery of basic higher education institution functions (teaching, administrative procedures, materials distribution, etc.), and are a characteristic feature of today’s educational context. The spread of e-learning and of competence in this field has given rise to growing concerns about the quality of this service. It is therefore vital to develop systems, models and scales that allow institutions to obtain valid, reliable and consistent measurements of the quality of educational services provided by means of VLEs. That is the basic aim of the work described in this article. Taking the literature on perceived service quality (PSQ) as its point of reference, and also a holistic approach to educational services, it presents a scale model that allows PSQ in such environments to be measured. The scale is formed by 24 items grouped into four dimensions: core business (teaching), facilitative or administrative services, support services and user interface.La aparición de entornos virtuales de aprendizaje (EVA) caracterizados por el uso de las tecnologías de la información y la comunicación (TIC) en las diversas funciones institucionales básicas de la educación superior (docencia, procesos administrativos, desarrollo y distribución de materiales, etc.) constituye un elemento característico del contexto educativo actual. La expansión del aprendizaje virtual (e-learning) y la competencia en este ámbito han hecho que aparezca una creciente preocupación por la calidad de este servicio. En este sentido resulta necesario desarrollar sistemas, modelos y escalas que permitan obtener medidas válidas, fiables y consistentes de la calidad de los servicios educativos que se ofrecen en EVA. Este es el objetivo básico del presente trabajo, que toma como punto referencia la literatura sobre calidad del servicio percibida (CSP), y adoptando una perspectiva holística de los servicios formativos se presenta una escala modelo que permite medir la CSP en dichos entornos. Esta escala está compuesta por 24 ítems que se subsumen en cuatro dimensiones: servicio esencial (docencia), servicios facilitadores o administrativos, servicios de apoyo e interfaz del usuario

    Exome sequencing identifies titin mutations causing hereditary myopathy with early respiratory failure (HMERF) in families of diverse ethnic origins

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    Background: Hereditary myopathy with early respiratory failure (HMERF) was described in several North European families and recently linked to a titin gene (TTN) mutation. We independently studied HMERF-like diseases with the purpose to identify the cause, refine diagnostic criteria, and estimate the frequency of this disease among myopathy patients of various ethnic origins. Methods: Whole exome sequencing analysis was carried out in a large U. S. family that included seven members suffering from skeletal muscle weakness and respiratory failure. Subsequent mutation screening was performed in further 45 unrelated probands with similar phenotypes. Studies included muscle strength evaluation, nerve conduction studies and concentric needle EMG, respiratory function test, cardiologic examination, and muscle biopsy. Results: A novel TTN p.Gly30150Asp mutation was identified in the highly conserved A-band of titin that co-segregated with the disease in the U. S. family. Screening of 45 probands initially diagnosed as myofibrillar myopathy (MFM) but excluded based on molecular screening for the known MFM genes led to the identification of a previously reported TTN p.Cys30071Arg mutation in one patient. This same mutation was also identified in a patient with suspected HMERF. The p.Gly30150Asp and p.Cys30071Arg mutations are localized to a side chain of fibronectin type III element A150 of the 10th C-zone super-repeat of titin. Conclusions: Missense mutations in TTN are the cause of HMERF in families of diverse origins. A comparison of phenotypic features of HMERF caused by the three known TTN mutations in various populations allowed to emphasize distinct clinical/pathological features that can serve as the basis for diagnosis. The newly identified p.Gly30150Asp and the p.Cys30071Arg mutation are localized to a side chain of fibronectin type III element A150 of the 10th C-zone super-repeat of titin

    Data on clinical characteristics of a heart failure patients’ cohort with reduced ejection fraction and analysis of the circulating values of five different heart failure biomarkers; high sensitivity troponin T, galectin-3, C-terminal propeptide of type I procollagen, soluble AXL and BNP

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    AbstractIn this article, the full description of a heart failure with reduced ejection fraction (HF_REF) cohort of 192 patients is provided. Tables with the baseline demographic, prior history, ECG parameters, echocardiographic parameters, laboratory values and pharmacological treatment of these patients are included. Also, the quartile values of the analyzed circulating biomarkers: high sensitivity Troponin T (hs-TnT), galectin-3 (Gal-3), C-terminal propeptide of type I procollagen (CICP), soluble AXL (sAXL) and Brain Natriuretic Peptide (BNP) are given. The main demographic and clinical features of the patients’ subgroups that have hs-TnT, Gal-3, CICP or BNP above the third quartile are described. Tables with Pearson correlation analysis of the HF_REF patients’ biomarker levels are included. And Pearson correlation analysis of the HF_REF patients’ hs-TnT, Gal-3, CICP levels with patients’ biochemical parameters, blood count and inflammation parameters are also described. These data are related to the research articles (AXL receptor tyrosine kinase is increased in patients with heart failure (M. Batlle, P. Recarte-Pelz, E. Roig, M.A. Castel, M. Cardona, M. Farrero, et al., 2014) [1] and Use of serum levels of high sensitivity troponin T, galectin-3 and C-terminal propeptide of type I procollagen at long term follow-up in Heart Failure patients with reduced ejection fraction: comparison with soluble AXL and BNP (M. Batlle, B. Campos, M. Farrero, M. Cardona, B. González, M.A. Castel, et al., 2016) [2]

    Sex and Heart Failure Treatment Prescription and Adherence

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    Heart disease is the leading cause of death in both men and women in developed countries. Heart failure (HF) contributes to significant morbidity and mortality and continues to remain on the rise. While advances in pharmacological therapies have improved its prognosis, there remain a number of unanswered questions regarding the impact of these therapies in women. Current HF guidelines recommend up-titration of neurohormonal blockade, to the same target doses in both men and women but several factors may impair achieving this goal in women: more adverse drug reactions, reduced adherence and even lack of evidence on the optimal drug dose. Systematic under-representation of women in cardiovascular drug trials hinders the identification of sex differences in the efficacy and safety of cardiovascular medications. Women are also under-represented in device therapy trials and are 30% less likely to receive a device in clinical practice. Despite presenting with fewer ventricular arrythmias and having an increased risk of implant complications, women show better response to resynchronization therapy, with lower mortality and HF hospitalizations. Fewer women receive advanced HF therapies. They have a better post-heart transplant survival compared to men, but an increased immunological risk needs to be acknowledged. Technological advances in mechanical circulatory support, with smaller and more hemocompatible devices, will likely increase their implantation in women. This review outlines current evidence regarding sex-related differences in prescription, adherence, adverse events, and prognostic impact of the main management strategies for HF

    Assessment of a primary care-based telemonitoring intervention for home care patients with heart failure and chronic lung disease. The TELBIL study

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    <p>Abstract</p> <p>Background</p> <p>Telemonitoring technology offers one of the most promising alternatives for the provision of health care services at the patient's home. The primary aim of this study is to evaluate the impact of a primary care-based telemonitoring intervention on the frequency of hospital admissions.</p> <p>Methods/design</p> <p>A primary care-based randomised controlled trial will be carried out to assess the impact of a telemonitoring intervention aimed at home care patients with heart failure (HF) and/or chronic lung disease (CLD). The results will be compared with those obtained with standard health care practice. The duration of the study will be of one year. Sixty patients will be recruited for the study. In-home patients, diagnosed with HF and/or CLD, aged 14 or above and with two or more hospital admissions in the previous year will be eligible.</p> <p>For the intervention group, telemonitoring will consist of daily patient self-measurements of respiratory-rate, heart-rate, blood pressure, oxygen saturation, weight and body temperature. Additionally, the patients will complete a qualitative symptom questionnaire daily using the telemonitoring system. Routine telephone contacts will be conducted every fortnight and additional telephone contacts will be carried out if the data received at the primary care centre are out of the established limits. The control group will receive usual care. The primary outcome measure is the number of hospital admissions due to any cause that occurred in a period of 12 months post-randomisation. The secondary outcome measures are: duration of hospital stay, hospital admissions due to HF or CLD, mortality rate, use of health care resources, quality of life, cost-effectiveness, compliance and patient and health care professional satisfaction with the new technology.</p> <p>Discussion</p> <p>The results of this study will shed some light on the effects of telemonitoring for the follow-up and management of chronic patients from a primary care setting. The study may contribute to enhance the understanding of alternative modes of health care provision for medically unstable elderly patients, who bear a high degree of physical and functional deterioration.</p> <p>Trial Registration</p> <p>ISRCTN: <a href="http://www.controlled-trials.com/ISRCTN89041993">ISRCTN89041993</a></p

    Clinical consensus recommendations regarding non-invasive respiratory support in the adult patient with acute respiratory failure secondary to SARS-CoV-2 infection

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    La enfermedad por coronavirus 2019 (COVID-19) es una infección del tracto respiratorio causada por un nuevo coronavirus emergente que se reconoció por primera vez en Wuhan, China, en diciembre de 2019. Actualmente la Organización Mundial de la Salud (OMS) ha definido la infección como pandemia y existe una situación de emergencia sanitaria y social para el manejo de esta nueva infección. Mientras que la mayoría de las personas con COVID-19 desarrollan solo una enfermedad leve o no complicada, aproximadamente el 14% desarrollan una enfermedad grave que requiere hospitalización y oxígeno, y el 5% pueden requerir ingreso en una unidad de cuidados intensivos. En casos severos, COVID-19 puede complicarse por el síndrome de dificultad respiratoria aguda (SDRA), sepsis y shock séptico y fracaso multiorgánico. Este documento de consenso se ha preparado sobre directrices basadas en evidencia desarrolladas por un panel multidisciplinario de profesionales médicos de cuatro sociedades científicas españolas (Sociedad Española de Medicina Intensiva y Unidades Coronarias [SEMICYUC], Sociedad Española de Neumología y Cirugía Torácica [SEPAR], Sociedad Española de Urgencias y Emergencias [SEMES], Sociedad Española de Anestesiología, Reanimación y Terapéutica del Dolor [SEDAR]) con experiencia en el manejo clínico de pacientes con COVID-19 y otras infecciones virales, incluido el SARS, así como en sepsis y SDRA. El documento proporciona recomendaciones clínicas para el soporte respiratorio no invasivo (ventilación no invasiva, oxigenoterapia de alto flujo con cánula nasal) en cualquier paciente con presentación sospechada o confirmada de COVID-19 con insuficiencia respiratoria aguda. Esta guía de consenso debe servir como base para una atención optimizada y garantizar la mejor posibilidad de supervivencia, así como permitir una comparación fiable de las futuras intervenciones terapéuticas de investigación que formen parte de futuros estudios observacionales o de ensayos clínicos.Coronavirus disease 2019 (COVID-19) is a respiratory tract infection caused by a newly emergent coronavirus, that was first recognized in Wuhan, China, in December 2019. Currently, the World Health Organization (WHO) has defined the infection as a global pandemic and there is a health and social emergency for the management of this new infection. While most people with COVID-19 develop only mild or uncomplicated illness, approximately 14% develop severe disease that requires hospitalization and oxygen support, and 5% require admission to an intensive care unit. In severe cases, COVID-19 can be complicated by the acute respiratory distress syndrome (ARDS), sepsis and septic shock, and multiorgan failure. This consensus document has been prepared on evidence-informed guidelines developed by a multidisciplinary panel of health care providers from four Spanish scientific societies (Spanish Society of Intensive Care Medicine [SEMICYUC], Spanish Society of Pulmonologists [SEPAR], Spanish Society of Emergency [SEMES], Spanish Society of Anesthesiology, Reanimation, and Pain [SEDAR]) with experience in the clinical management of patients with COVID-19 and other viral infections, including SARS, as well as sepsis and ARDS. The document provides clinical recommendations for the noninvasive respiratory support (noninvasive ventilation, high flow oxygen therapy with nasal cannula) in any patient with suspected or confirmed presentation of COVID-19 with acute respiratory failure. This consensus guidance should serve as a foundation for optimized supportive care to ensure the best possible chance for survival and to allow for reliable comparison of investigational therapeutic interventions as part of randomized controlled trials

    A study on the safety and efficacy of reveglucosidase alfa in patients with late-onset Pompe disease

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    Abstract Background Late-onset Pompe disease is a rare genetic neuromuscular disorder caused by lysosomal acid alpha-glucosidase (GAA) deficiency that ultimately results in mobility loss and respiratory failure. Current enzyme replacement therapy with recombinant human (rh)GAA has demonstrated efficacy in subjects with late-onset Pompe disease. However, long-term effects of rhGAA on pulmonary function have not been observed, likely related to inefficient delivery of rhGAA to skeletal muscle lysosomes and associated deficits in the central nervous system. To address this limitation, reveglucosidase alfa, a novel insulin-like growth factor 2 (IGF2)-tagged GAA analogue with improved lysosomal uptake, was developed. This study evaluated the pharmacokinetics, safety, and exploratory efficacy of reveglucosidase alfa in 22 subjects with late-onset Pompe disease who were previously untreated with rhGAA. Results Reveglucosidase alfa plasma concentrations increased linearly with dose, and the elimination half-life was <1.2 h. Eighteen of 22 subjects completed 72 weeks of treatment. The most common adverse events were hypoglycemia (63%), dizziness, fall, headache, and nausea (55% for each). Serious adverse events included hypersensitivity (n = 1), symptomatic hypoglycemia (n = 2), presyncope (n = 1), and acute cardiac failure (n = 1). In the dose-escalation study, all treated subjects tested positive for anti-reveglucosidase alfa, anti-rhGAA, anti-IGF1, and anti-IGF2 antibodies at least once. Subjects receiving 20 mg/kg of reveglucosidase alfa demonstrated increases in predicted maximum inspiratory pressure (13.9%), predicted maximum expiratory pressure (8.0%), forced vital capacity (−0.4%), maximum voluntary ventilation (7.4 L/min), and mean absolute walking distance (22.3 m on the 6-min walk test) at 72 weeks. Conclusions Additional studies are needed to further assess the safety and efficacy of this approach. Improvements in respiratory muscle strength, lung function, and walking endurance in subjects with LOPD may make up for the risk of hypersensitivity reactions and hypoglycemia. Reveglucosidase alfa may provide a new treatment option for patients with late-onset Pompe disease. Trial registration ISRCTN01435772 and ISRCTN01230801 , registered 27 October 2011

    Registro Español de Trasplante Cardiaco. XXXI Informe Oficial de la Asociación de Insuficiencia Cardiaca de la Sociedad Española de Cardiología

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    Introducción y objetivos Se presentan las características clínicas y los resultados de los trasplantes cardiacos realizados en España con la actualización correspondiente a 2019. Métodos Se describen las características clínicas y los resultados de los trasplantes cardiacos realizados en 2019, así como las tendencias de estos en el periodo 2010-2018. Resultados En 2019 se realizaron 300 trasplantes (8.794 desde 1984; 2.745 entre 2010 y 2019). Respecto a años previos, los cambios más llamativos son el descenso hasta el 38% de los trasplantes realizados en código urgente, y la consolidación en el cambio de asistencia circulatoria pretrasplante, con la práctica desaparición del balón de contrapulsación (0, 7%), la estabilización del uso del oxigenador extracorpóreo de membrana (9, 6%) y el aumento de los dispositivos de asistencia ventricular (29%). La supervivencia en el trienio 2016-2018 es similar a la del trienio 2013-2015 (p = 0, 34), y ambas mejores que la del trienio 2010-2012 (p = 0, 002 y p = 0, 01 respectivamente). Conclusiones Se mantienen estables tanto la actividad del trasplante cardiaco en España como los resultados en supervivencia en los últimos 2 trienios. Hay una tendencia a realizar menos trasplantes urgentes, la mayoría con dispositivos de asistencia ventricular. Introduction and objectives: The present report describes the clinical characteristics and outcomes of heart transplants in Spain and updates the data to 2019. Methods: We describe the clinical characteristics and outcomes of heart transplants performed in Spain in 2019, as well as trends in this procedure from 2010 to 2018. Results: In 2019, 300 transplants were performed (8794 since 1984; 2745 between 2010 and 2019). Compared with previous years, the most notable findings were the decreasing rate of urgent transplants (38%), and the consolidation of the type of circulatory support prior to transplant, with an almost complete disappearance of counterpulsation balloon (0.7%), stabilization in the use of extracorporeal membrane oxygenation (9.6%), and an increase in the use of ventricular assist devices (29.0%). Survival from 2016 to 2018 was similar to that from 2013 to 2015 (P = .34). Survival in both these periods was better than that from 2010 to 2012 (P = .002 and P = .01, respectively). Conclusions: Heart transplant activity has remained stable during the last few years, as have outcomes (in terms of survival). There has been a trend to a lower rate of urgent transplants and to a higher use of ventricular assist devices prior to transplant

    Place of death in patients with amyotrophic lateral sclerosis

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    Amyotrophic lateral sclerosis (ALS) is a degenerative neurological disorder that affects motor neurons. Involvement of respiratory muscles causes the failure of the ventilator pump with more or less significant bulbar troubles. ALS course is highly variable but, in most cases, this disease entails a very significant burden for patients and caregivers, especially in the end-of-life period.In order to analyze the characteristics of ALS patients who die at home (DH) and in hospital (DHosp) and to study the variability of clinical practice, a retrospective medical records analysis was performed (n = 77 from five hospitals). Variables: time elapsed since the onset of symptoms and the beginning of ventilation, characteristics of ventilation (device, mask and hours/day), and support devices and procedures. Results: In all, 14% of patients were ventilated by tracheotomy. From the analysis, 57% of patients were of DH. Mean time since the onset of symptoms was 35.93 ± 25.89 months, significantly shorter in patients who DHosp (29.28 ± 19.69 months) than DH (41.12 ± 29.04) (p = 0.044). The percentage of patients with facial ventilation is higher in DHosp (11.4% vs 39.4%, p < 0.005).DH or not is related to a set of elements in which health resources, physician attitudes and support resources in the community play a role in the decision-making process. There is great variability between countries and between hospitals in the same country. Given the variability of circumstances in each territory, the place of death in ALS might not be the most important element; more important are the conditions under which the process unfolds. Resumo: A esclerose lateral amiotrófica (ELA) é uma perturbação neurológica degenerativa que afeta os neurónios motores. O envolvimento dos músculos respiratórios causa a falha da bomba ventilatória, com problemas bulbares mais ou menos significativos. A evolução da ELA é bastante variável, mas, na maioria dos casos, esta doença implica um peso muito significativo para doentes e prestadores de cuidados, em particular no período terminal.Para analisar as características dos doentes com ELA que morrem em casa (DH) e no hospital (DHosp), para além da avaliação da variabilidade das práticas clínicas, foi realizada uma análise retrospetiva dos registos médicos (n=77 de 5 hospitais). Variáveis: tempo decorrido desde o aparecimento dos sintomas e o início da ventilação, características da ventilação (dispositivo, máscara e horas/dia) e dispositivos e procedimentos de apoio. Resultados: Catorze por cento dos doentes foram tratados por traqueotomia. Cinquenta e sete por cento dos doentes morreu em casa (DH). O tempo médio desde o aparecimento dos sintomas foi de 35,93 ± 25,89 meses, significativamente inferior em doentes que morrem no hospital (DHosp) (29,28 ± 19,69 meses) comparativamente com os que morrem em casa (DH) (41,12 ± 29,04) (p=0,044). A percentagem de doentes com ventilação facial foi superior nos DHosp (11,4% vs 39.4%, p<0,005).DH ou não, está relacionado a um conjunto de factores em que os recursos de saúde, as atitudes dos médicos e o apoio na comunicação desempenham um papel importante na tomada de decisão. Existe uma grande variabilidade entre países e entre hospitais no mesmo país. Dada a variabilidade de circunstâncias em cada território, o local do óbito na ELA poderá não ser o elemento mais importante, sendo provavelmente mais relevantes as condições em que o processo se desenrola. Keywords: Amyotrophic lateral sclerosis, Place of death, Hospital, Home mechanical ventilation, Tracheotomy, Palavras-chave: Esclerose lateral amiotrófica, Local do óbito, Hospital, Ventilação mecânica caseira, Traqueotomi
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