Electronic Patient-Reported Outcomes in Nephrology: Focus on Hemodialysis

Hemodialysis; ePRO; PROMs; PREMsHemodiàlisi; ePRO; PROMs; PREMsHemodiálisis; ePRO; PROMs; PREMsThe success of hemodialysis (HD) treatments has been evaluated using objective measures of analytical parameters, or machine-measured parameters, despite having available validated instruments that assess patient perspective. There is an emerging interest regarding the use and relevance of patient-related outcomes (PROs). Electronic PROs (ePROs) involve the use of electronic technology, provide rapid access to this information, and are becoming more widely used in clinical trials and studies to evaluate efficacy and safety. Despite the scarce literature, this review suggests that ePROs are useful in providing a more customized and multidimensional approach to patient management and in making better clinical decisions in relevant aspects such as vascular access, duration and frequency of dialysis sessions, treatment of anemia, mental health, fatigue, and quality of life. The purpose of this review is to raise interest in the systematic use of ePROs in HD and to promote the development of studies in this field, which can respond to the gaps in knowledge and contribute to the implementation of the use of ePROs through new technologies, helping to improve the quality of health care

Reflections on the need for Nephropathology Reference Units

RESUMEN1. La ERC tiene una elevada incidencia y prevalencia con unalto impacto sobre la calidad de vida y mortalidad de lospacientes, lo que supone un importante consumo de recur-sos sanitarios.2. En un porcentaje relevante de pacientes no se dispone deun diagnóstico etiológico de la ERC, lo que limita sus posi-bilidades de tratamiento y curación.3. Las acciones dirigidas a mejorar el diagnóstico permitiránfavorecer un mejor conocimiento de las causas de la ERC yoptimizar el tratamiento.4. La biopsia renal, constituye el procedimiento necesa-rio para el estudio histopatológico del tejido renal quepermitirá establecer el diagnóstico, las posibilidades de tra-tamiento y el pronóstico del da˜no renal.5. El trasplante renal constituye la mejor opción de TRS. Lacausa más frecuente de pérdida del injerto renal es elrechazo. La biopsia renal es el único método para establecerel tipo de rechazo e iniciar el tratamiento más adecuado.6. La planificación del tratamiento de la enfermedad renalse establece con base en un diagnóstico preciso y este sebasa en el diagnóstico histológico. La falta de una ade-cuada interpretación diagnóstica, bien por inexperienciadel patólogo, bien por falta de medios diagnósticos (micro-scopia electrónica), condiciona y limita las opciones detratamiento en perjuicio del enfermo

Methodological approach to designing a telecare system for pre-dialysis and peritoneal dialysis patients

Antecedentes: Un importante obstáculo que dificulta el despliegue de soluciones tecnológicas en sanidad es el rechazo que encuentran los sistemas desarrollados por los usuarios que tienen que utilizarlos (ya sean profesionales sanitarios o pacientes), que consideran que no se adaptan a sus necesidades reales. Objetivos: (1) Diseñar una arquitectura tecnológica para la asistencia remota de pacientes nefrológicos aplicando una metodología que prime la implicación de los usuarios (profesionales y pacientes) en todo el diseño y desarrollo; (2) ilustrar cómo las necesidades de los usuarios pueden ser recogidas y respondidas mediante la tecnología, aumentando el nivel de aceptación de los sistemas finales. Métodos: Para obtener las principales necesidades que existen actualmente en Nefrología se implicó a un conjunto de servicios españoles de la especialidad. Se realizó una recogida de necesidades mediante entrevistas semiestructuradas al equipo médico y cuestionarios a profesionales y pacientes. Resultados: Se extrajeron un conjunto de requisitos tanto de profesionales como de pacientes y, paralelamente, el grupo de ingenieros biomédicos identificó requisitos de la asistencia remota de pacientes desde un punto de vista tecnológico. Todos estos requisitos han dado pie al diseño de una arquitectura modular para la asistencia remota de pacientes en diálisis peritoneal y prediálisis. Conclusiones: Este trabajo ilustra cómo es posible implicar a los usuarios en todo el proceso de diseño y desarrollo de un sistema. Fruto de este trabajo es el diseño de una arquitectura modular adaptable para asistencia remota de pacientes nefrológicos respondiendo a las preferencias y necesidades de los usuarios pacientes y profesionales consultados.Background: A major obstacle that hinders the implementation of technological solutions in healthcare is the rejection of developed systems by users (healthcare professionals and patients), who consider that they do not adapt to their real needs. Objectives: (1) To design technological architecture for the telecare of nephrological patients by applying a methodology that prioritises the involvement of users (professionals and patients) throughout the design and development process; (2) to show how users’ needs can be determined and addressed by means of technology, increasing the acceptance level of the final systems. Methods: In order to determine the main current needs in Nephrology, a group of Spanish Nephrology Services was involved. Needs were recorded through semi-structured interviews with the medical team and questionnaires for professionals and patients. Results: A set of requirements were garnered from professionals and patients. In parallel, the group of biomedical engineers identified requirements for patient telecare from a technological perspective. All of these requirements drove the design of modular architecture for the telecare of peritoneal dialysis and pre-dialysis patients. Conclusions: This work shows how it is possible to involve users in the whole process of design and development of a system. The result of this work is the design of adaptable modular architecture for the telecare of nephrological patients and it addresses the preferences and needs of patient and professional users consulted

Protocol against coronavirus diseases in patients on renal replacement therapy: Dialysis and kidney transplan

Dialysis patients and kidney transplant receptors represent a group patients at risk with significant epidemiological implications. So far there is not much information regarding specific actions to be implemented in dialysis patients, dialysis facilities and kidney transplant patients. The American Society of Nephrology (ASN) and the European Dialysis and Transplant Association (EDTA) have published a number of recommendations that are included in this protocol. The Spanish Society of Immunology and the Spanish Society of Infectious Diseases and Clinical Microbiology have also developed a series of recommendations for prevention and care of the virus infection in immunosuppressed patients that are extensible to kidney transplant recipients that are also included. This protocol will be exposed to continuous review based on the up coming information that will be available in the following days and weeks.YesLos pacientes en diálisis y los receptores de trasplante renal constituyen un grupo de riesgo y presentan connotaciones relevantes desde el punto de vista epidemiológico. Hasta el momento no hay mucha información específica en relación con los pacientes renales, en Unidades de Diálisis o pacientes trasplantados. La Sociedad Americana de Nefrología (ASN) y la Sociedad Europea de Diálisis y Trasplante (EDTA) han publicado una serie de recomendaciones que incluimos en este protocolo. La Sociedad Española de Inmunología y la Sociedad Española de Enfermedades Infecciosas y Microbiología Clínica han elaborado también una serie de recomendaciones de prevención frente al virus en pacientes inmunodeprimidos que son extensibles a los trasplantados y que añadimos igualmente. Este protocolo estará sujeto a revisión continua en función de la información de la que se disponga en los días y semanas sucesivos

Situación de la infección por SARS-CoV-2 en pacientes en tratamiento renal sustitutivo. Informe del Registro COVID-19 de la Sociedad Española de Nefrología (SEN)

Introduction: The recent appearance of the SARS-CoV-2 coronavirus pandemic has had a significant impact on the general population. Patients on renal replacement therapy (RRT) have not been unaware of this situation and due to their characteristics they are especially vulnerable. We present the results of the analysis of the COVID-19 Registry of the Spanish Society of Nephrology. Material and methods: The Registry began operating on March 18th, 2020. It collects epidemiological variables, contagion and diagnosis data, signs and symptoms, treatments and outcomes. It is an online registry. Patients were diagnosed with SARS-CoV-2 infection based on the results of the PCR of the virus, carried out both in patients who had manifested compatible symptoms or had suspicious signs, as well as in those who had undergone screening after some contact acquainted with another patient. Results: As of April 11, the Registry had data on 868 patients, from all the Autonomous Communities. The most represented form of RRT is in-center hemodialysis (ICH) followed by transplant patients. Symptoms are similar to the general population. A very high percentage (85%) required hospital admission, 8% in intensive care units. The most used treatments were hydroxychloroquine, lopinavir-ritonavir, and steroids. Mortality is high and reaches 23%; deceased patients were more frequently on ICH, developed pneumonia more frequently, and received less frequently lopinavir-ritonavir and steroids. Age and pneumonia were independently associated with the risk of death. Conclusions: SARS-CoV-2 infection already affects a significant number of Spanish patients on RRT, mainly those on ICH, hospitalization rates are very high and mortality is high; age and the development of pneumonia are factors associated with mortality

The Spanish Society of Nephrology (SENEFRO) commentary to the Spain GBD 2016 report: keeping chronic kidney disease out of sight of health authorities will only magnify the problem

The Global Burden of Disease (GBD) study measures the health of populations worldwide and by country on an annual basis and aims at helping guide public policy on health issues. The GBD estimates for Spain in 2016 and recent trends in mortality and morbidity from 2006 to 2016 were recently published. According to these estimates, chronic kidney disease was the 8th cause of death in Spain in 2016. Among the top ten causes of death, chronic kidney disease was the fastest growing from 2006 to 2016, after Alzheimer disease. At the current pace of growth, chronic kidney disease is set to become the second cause of death in Spain, after Alzheimer disease, by 2100. Additionally, among major causes of death, chronic kidney disease also ranked second only to Alzheimer as the fastest growing cause of Years Lived with Disability (YLDs) and Disability Adjusted Life Years (DALYs). Public resources devoted to prevention, care and research on kidney disease should be in line with both its current and future burden