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

Fosfatos de origen vegetal, fitato y calcificaciones patológicas en la enfermedad renal crónica

ResumenEl fitato o myo-inositol-1,2,3,4,5,6-hexakis dihidrogenofostato (InsP6) es un compuesto fosforado de origen natural que está presente en numerosos alimentos, principalmente en legumbres, cereales integrales y frutos secos. Los pacientes con enfermedad renal crónica (ERC) experimentan una mortalidad por enfermedad cardiovascular hasta 30veces mayor que la población en general. Las calcificaciones vasculares (CV) contribuyen directamente en la morbimortalidad general, y de forma especial en la ERC. Esta elevada mortalidad se debe, en parte, a la elevación en los niveles de fósforo en sangre. Por ello, el control de fósforo en la dieta es fundamental. El fósforo dietético puede clasificarse en función de su estructura en fósforo orgánico (origen vegetal y animal) e inorgánico (conservantes y aditivos). El fósforo de origen vegetal (legumbres y frutos secos), principalmente asociado a InsP6, es menos absorbible por el tracto gastrointestinal humano siendo la biodisponibilidad del fósforo procedente de estos alimentos muy baja. Datos recientes indican que la restricción impuesta de alimentos que contienen fosfatos vegetales puede comprometer el aporte adecuado de nutrientes que tienen un efecto beneficioso en la prevención de episodios cardiovasculares, como pueda ser la fibra o al propio InsP6 presente en frutos secos y legumbres. Estudios experimentales en animales y observacionales en humanos sugieren que el InsP6 puede prevenir la litiasis, las CV y proteger de la osteoporosis. En conclusión, creemos necesario realizar estudios prospectivos para elucidar los posibles beneficios y riesgos de una dieta rica en fitato (InP6) en la ERC o de su uso como fármaco intravenoso en pacientes en hemodiálisis.AbstractPhytate, or myo-inositol 1,2,3,4,5,6-hexakis dihydrogen phosphate (InsP6), is a naturally occurring phosphorus compound that is present in many foods, mainly legumes, whole grains and nuts. Patients with chronic kidney disease (CKD) have cardiovascular disease mortality up to 30times higher than the general population. Vascular calcifications (VCs) directly contribute to overall morbidity and mortality, especially in CKD. In part, this high mortality is due to elevated levels of phosphorus in the blood. Therefore, control of dietary phosphorus is essential. Dietary phosphorus can be classified according to its structure in organic phosphorus (plant and animal) and inorganic (preservatives and additives). Plant-phosphorus (legumes and nuts), mainly associated with InsP6, is less absorbable by the human gastrointestinal tract as the bioavailability of phosphorous from plant-derived foods is very low. Recent data indicate that restriction of foods containing plant phosphates may compromise the adequate supply of nutrients that have a beneficial effect in preventing cardiovascular events, such as InsP6 or fibre found in legumes and nuts. Experimental studies in animals and observational studies in humans suggest that InsP6 can prevent lithiasis and VCs and protect from osteoporosis. In conclusion, we need prospective studies to elucidate the potential benefits and risks of phytate (InsP6) through the diet and as an intravenous drug in patients on haemodialysis

Clinical and laboratory test in patients with familial amyloid polyneuropathy (TTR-FAP): differences between symptomatic patients and asymptomatic carriers

Introducción: La polineuropatía amiloidótica familiar asociada a transtirretina (PAF-TTR) es una enfermedad causada por el depósito el depósito de amiloide en los tejidos, cuya proteína precursora es la transtirretina. La afectación clínica y las alteraciones analíticas dependen del estadio y del momento del diagnóstico de la enfermedad. Métodos: Estudio transversal, observacional donde se recogieron datos clínicos y analíticos de 10 pacientes sintomáticos y 10 portadores asintomáticos. Resultados: De un total de 20 casos: 14 mujeres (70%) con una mediana de edad de 47.5 años. Todos los portadores asintomáticos se diagnosticaron por cribado familiar y el 90% de los pacientes sintomáticos tenían déficit sensitivo al diagnóstico con electromiograma (EMG) patológico (p=0,016). Los pacientes sintomáticos tenían mayor variabilidad de presión arterial, sistólica (p=0,016), diastólica (p=0,045) y de frecuencia cardíaca (p<0,005). En las alteraciones analíticas destacan un descenso de T4 libre (p<0,005) y la elevación de cistatina C (p=0,046) en los pacientes sintomáticos. En cuanto a la comparación por edades en 9 (45%) casos se realizó un diagnóstico tardío (≥50 años) y en 11 (55%) diagnóstico precoz (<50 años), la edad media era de 38,55 vs 61,56 años (p<0,005). Los diagnosticados de forma tardía tenían proteínas totales bajas (p=0,008), elevación de BUN sérica (p<0,005) y cistatina C (p=0,04). Conclusiones: Los pacientes sintomáticos fueron diagnosticados por la presencia de síntomas neurológicos y disfunción autonómica. En cuanto a la comparación entre la edad al diagnóstico, los casos con diagnóstico precoz presentaban mayor implicación familiar, menor número de órganos afectados, escasa sintomatología neurológica y manifestaciones más leves.Background: Transthyretin-associated Familial Amyloid Polyneuropathy (TTR-PAF) is a disease caused by the deposit of abnormal transthyretin on the tissues, mainly on the nerves. The clinical affectation and laboratory test alterations depend on the clinical stage and the moment of disease diagnosis. Methods: A cross-sectional, observational study was performed. Medical records and laboratory test information of 20 patients: 10 symptomatic patients and 10 asymptomatic carriers. Results: Out of a total of 20 patients: 14 women (70 %) with a median age of 47.5 years. All of asymptomatic carriers were diagnosed for family history and 90 % of the symptomatic patients had neurologic impairment demonstrated with pathological electroneurography (NC) (p=0.016). The symptomatic patients had higher variability of blood pressure both systolic (p=0.016) and diastolic (p=0.045) and of heart rate (p<0.005). Regarding laboratory test alterations this patients presented a decrease of free T4 (p<0.005) and an increase of cystatine C (p=0.046). As for the comparison by age-at-onset in 9 (45 %) cases the diagnosis was late-onset (≥50 years) and 11 (55 %) early-onset (<50 years). Mean age was 38.55 vs 61.56 years (p<0.005). The late-onset group had a decrease of total proteins (p=0.008) and an increase of BUN (p<0.005) and cystatine C (p=0.04). Conclusions: Symptomatic patients were diagnosed by the presence of neurologic symptoms and vegetative symptoms. As to the comparison of age-at-onset, the early-onset has greater family history, minor number of affected organs, low neurological involvement and mild symptoms

Chronic Kidney Disease-Associated Pruritus and Quality of Life: Learning from Our Patients

Chronic kidney disease; Haemodialysis; Opioid system; PruritusEnfermedad renal crónica; Hemodiálisis; Sistema opioide; PruritoMalaltia renal crònica; Hemodiàlisi; Sistema opioide; PruritChronic kidney disease-associated pruritus is itching directly related to kidney disease that cannot be explained by any other condition. Despite technological advances in the different aspects of dialysis sessions and the best treatment for chronic kidney disease patients, it is still a common problem in our patients. The many complex physiological mechanisms involved, the different hypotheses made over the years on the aetiology of the condition, and the great clinical variability may partially explain the limited knowledge about this problem and the difficulties in treating it. The presence of all these factors leads to the persistence of unpleasant symptoms, which must affect the disease burden and quality of life of kidney patients. Through the presentation of an illustrative clinical case, the aim of this review article is to highlight the need for adequate diagnosis and an improved approach to all aspects of chronic kidney disease-associated pruritus, in view of the heavy burden of the disease and the huge impact on the patient's quality of life

Black holes, gravitational waves and fundamental physics: a roadmap

The grand challenges of contemporary fundamental physics—dark matter, dark energy, vacuum energy, inflation and early universe cosmology, singularities and the hierarchy problem—all involve gravity as a key component. And of all gravitational phenomena, black holes stand out in their elegant simplicity, while harbouring some of the most remarkable predictions of General Relativity: event horizons, singularities and ergoregions. The hitherto invisible landscape of the gravitational Universe is being unveiled before our eyes: the historical direct detection of gravitational waves by the LIGO-Virgo collaboration marks the dawn of a new era of scientific exploration. Gravitational-wave astronomy will allow us to test models of black hole formation, growth and evolution, as well as models of gravitational-wave generation and propagation. It will provide evidence for event horizons and ergoregions, test the theory of General Relativity itself, and may reveal the existence of new fundamental fields. The synthesis of these results has the potential to radically reshape our understanding of the cosmos and of the laws of Nature. The purpose of this work is to present a concise, yet comprehensive overview of the state of the art in the relevant fields of research, summarize important open problems, and lay out a roadmap for future progress. This write-up is an initiative taken within the framework of the European Action on 'Black holes, Gravitational waves and Fundamental Physics'

Plant phosphates, phytate and pathological calcifications in chronic kidney disease

Phytate, or myo-inositol 1,2,3,4,5,6-hexakis dihydrogen phosphate (InsP6), is a naturally occurring phosphorus compound that is present in many foods, mainly legumes, whole grains and nuts. Patients with chronic kidney disease (CKD) have cardiovascular disease mortality up to 30 times higher than the general population. Vascular calcifications (VCs) directly contribute to overall morbidity and mortality, especially in CKD. In part, this high mortality is due to elevated levels of phosphorus in the blood. Therefore, control of dietary phosphorus is essential. Dietary phosphorus can be classified according to its structure in organic phosphorus (plant and animal) and inorganic (preservatives and additives). Plant-phosphorus (legumes and nuts), mainly associated with InsP6, is less absorbable by the human gastrointestinal tract as the bioavailability of phosphorous from plant-derived foods is very low. Recent data indicate that restriction of foods containing plant phosphates may compromise the adequate supply of nutrients that have a beneficial effect in preventing cardiovascular events, such as InsP6 or fibre found in legumes and nuts. Experimental studies in animals and observational studies in humans suggest that InsP6 can prevent lithiasis and VCs and protect from osteoporosis. In conclusion, we need prospective studies to elucidate the potential benefits and risks of phytate (InsP6) through the diet and as an intravenous drug in patients on haemodialysis

Variabilidad clínica y analítica en casos con polineuropatía amioloidótica familiar (PAF-TTR): comparación entre portadores sanos y pacientes sintomáticos

Background: Transthyretin-associated Familial Amyloid Polyneuropathy (TTR-PAF) is a disease caused by the deposit of abnormal transthyretin on the tissues, mainly on the nerves. The clinical affectation and laboratory test alterations depend on the clinical stage and the moment of disease diagnosis. Methods: A cross-sectional, observational study was performed. Medical records and laboratory test information of 20 patients: 10 symptomatic patients and 10 asymptomatic carriers. Results: Out of a total of 20 patients: 14 women (70 %) with a median age of 47.5 years. All of asymptomatic carriers were diagnosed for family history and 90 % of the symptomatic patients had neurologic impairment demonstrated with pathological electroneurography (NC) (p=0.016). The symptomatic patients had higher variability of blood pressure both systolic (p=0.016) and diastolic (p=0.045) and of heart rate (p<0.005). Regarding laboratory test alterations this patients presented a decrease of free T4 (p<0.005) and an increase of cystatine C (p=0.046). As for the comparison by age-at-onset in 9 (45 %) cases the diagnosis was late-onset (≥50 years) and 11 (55 %) early-onset (<50 years). Mean age was 38.55 vs 61.56 years (p<0.005). The late-onset group had a decrease of total proteins (p=0.008) and an increase of BUN (p<0.005) and cystatine C (p=0.04). Conclusions: Symptomatic patients were diagnosed by the presence of neurologic symptoms and vegetative symptoms. As to the comparison of age-at-onset, the early-onset has greater family history, minor number of affected organs, low neurological involvement and mild symptoms.Introducción: La polineuropatía amiloidótica familiar asociada a transtirretina (PAF-TTR) es una enfermedad causada por el depósito el depósito de amiloide en los tejidos, cuya proteína precursora es la transtirretina. La afectación clínica y las alteraciones analíticas dependen del estadio y del momento del diagnóstico de la enfermedad. Métodos: Estudio transversal, observacional donde se recogieron datos clínicos y analíticos de 10 pacientes sintomáticos y 10 portadores asintomáticos. Resultados: De un total de 20 casos: 14 mujeres (70%) con una mediana de edad de 47.5 años. Todos los portadores asintomáticos se diagnosticaron por cribado familiar y el 90% de los pacientes sintomáticos tenían déficit sensitivo al diagnóstico con electromiograma (EMG) patológico (p=0,016). Los pacientes sintomáticos tenían mayor variabilidad de presión arterial, sistólica (p=0,016), diastólica (p=0,045) y de frecuencia cardíaca (p<0,005). En las alteraciones analíticas destacan un descenso de T4 libre (p<0,005) y la elevación de cistatina C (p=0,046) en los pacientes sintomáticos. En cuanto a la comparación por edades en 9 (45%) casos se realizó un diagnóstico tardío (≥50 años) y en 11 (55%) diagnóstico precoz (<50 años), la edad media era de 38,55 vs 61,56 años (p<0,005). Los diagnosticados de forma tardía tenían proteínas totales bajas (p=0,008), elevación de BUN sérica (p<0,005) y cistatina C (p=0,04). Conclusiones: Los pacientes sintomáticos fueron diagnosticados por la presencia de síntomas neurológicos y disfunción autonómica. En cuanto a la comparación entre la edad al diagnóstico, los casos con diagnóstico precoz presentaban mayor implicación familiar, menor número de órganos afectados, escasa sintomatología neurológica y manifestaciones más leves