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

Chronic 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.

Electronic Patient-Reported Outcomes in Nephrology: Focus on Hemodialysis.

The 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.

Acidosis tubular renal distal (ATRd): aspectos epidemiológicos, diagnósticos, de seguimiento clínico y terapéuticos. Resultados de una encuesta a un colectivo de nefrólogos / Distar Renal Tubular Acidosis (dRTA): Epidemiological, diagnostics, clinical follow-up and therapeutical issues. Nephrologists cohort survey outcome

ANTECEDENTES Y OBJETIVOS: La acidosis tubular renal distal (ATRd) es una enfermedad minoritaria, de origen genético o adquirido, caracterizada por una incapacidad de excreción urinaria de hidrogeniones (H+), hipobicarbonatemia, hipercloremia, hipocitraturia y habitualmente hipokaliemia e hipercalciuria. Las formas genéticas suelen diagnosticarse en los primeros meses de vida y su tratamiento consiste en suplementos de álcali encaminados a evitar las consecuencias clínicas a largo plazo, sobre todo la enfermedad renal crónica (presente en algunas series hasta en el 82% de los pacientes) y la enfermedad ósea asociada. Se desarrolló una encuesta multirrespuesta cerrada de 10 preguntas encaminada a conocer aspectos epidemiológicos, diagnósticos, del manejo clínico y terapéutico, dentro del colectivo de nefrólogos españoles. MATERIALES Y MÉTODOS: Encuesta distribuida a los asistentes a un foro científico sobre ATRd durante el congreso de 2019 de la Sociedad Española de Nefrología (SEN); las respuestas se recogieron a la salida del mismo. Los resultados se analizaron con un test estadístico paramétrico estableciéndose el porcentaje de cada respuesta a las 10 preguntas. RESULTADOS: De entre los que respondieron a la encuesta, el 44,4 y el 37,7% no atendieron a ningún paciente con ATRd en el último año ni en los tres anteriores, respectivamente. Cuando se sospecha la patología, el diagnóstico genético confirmatorio se realiza solo en el 13,3% de los casos y el estudio familiar solo en el 11,1%. Solo el 26,6% afirman que el control metabólico es excelente, bueno o muy bueno, y el 69% piensan que el cumplimiento terapéutico es regular, malo o muy malo. CONCLUSIONES: La encuesta ha puesto de manifiesto el relativo desconocimiento de esta patología, así como la baja satisfacción con el control metabólico y el pobre cumplimiento terapéutico, lo cual puede conllevar una mayor severidad en la enfermedad renal y ósea asociadas a la ATRd

BACKGROUND AND OBJECTIVES: dRTA is a genetic or acquired rare disease, characterized by an unability to excrete hydrogens (H+) into urine, hypobicarbonatemia, hyperchloremia, and frequently hypercalciuria and hypokalaemia. Genetic forms are usually diagnosed during the first months of life and its treatment is based on providing alkali supplements in order to prevent long term clinical consequences, particularly chronic kidney disease (described in some cohorts up to 82% of dRTA patients) and the associated bone disease. A 10 queries multi choice closed response survey was designed to know more about epidemiological, diagnostics, clinical management and therapeutical issues of this disease among Spanish nephrologists. MATERIALS AND METHODS: This survey was delivered to the attendees to a scientific meeting on dRTA at the Spanish Nephrology Society congress in 2019. Surveys were collected at the end of this dRTA event. Results were analyzed by using a parametric statistical test, obtaining the percentage of each response for the 10 questions. RESULTS: Among the survey responders, 44.4% and 37.7% did not visit any dRTA patient during the 1st and 3rd last year respectively. When having a suspicious diagnose, confirming genetic diagnostic test is only performed on the 13.3% of cases and pedigree studies only on 11.1%. Only a 26.6% confirms that metabolic control is excellent, good or very good, and 69% of the responders believe that treatment compliance is not bad, bad or very bad. CONCLUSIONS: This survey enhances the fact that dRTA is not a well known entity, satisfaction with metabolic control is poor and compliance is low. All these factors can lead to a higher severity of renal and bone diseases associated to dRTA

Distar Renal Tubular Acidosis (dRTA): Epidemiological, diagnostics, clinical follow-up and therapeutical issues. Nephrologists cohort survey outcome.

BACKGROUND AND OBJECTIVES: dRTA is a genetic or acquired rare disease, characterized by an unability to excrete hydrogens (H+) into urine, hypobicarbonatemia, hyperchloremia, and frequently hypercalciuria and hypokalaemia. Genetic forms are usually diagnosed during the first months of life and its treatment is based on providing alkali supplements in order to prevent long term clinical consequences, particularly chronic kidney disease (described in some cohorts up to 82% of dRTA patients) and the associated bone disease. A 10 queries multi choice closed response survey was designed to know more about epidemiological, diagnostics, clinical management and therapeutical issues of this disease among Spanish nephrologists. METHODS AND MATERIALS: This survey was delivered to the attendees to a scientific meeting on dRTA at the Spanish Nephrology Society congress in 2019. Surveys were collected at the end of this dRTA event. Results were analyzed by using a parametric statistical test, obtaining the percentage of each response for the 10 questions. RESULTS: Among the survey responders, 44.4% and 37.7% did not visit any dRTA patient during the 1st and 3rd last year respectively. When having a suspicious diagnose, confirming genetic diagnostic test is only performed on the 13.3% of cases and pedigree studies only on 11.1%. Only a 26.6% confirms that metabolic control is excellent, good or very good. 69% of the responders believe that treatment compliance is not bad, bad or very bad. CONCLUSIONS: This survey enhances the fact that dRTA is not a well known entity, satisfaction with metabolic control is poor and compliance is low. All these factors can lead to a higher severity of renal and bone diseases associated to dRTA.

Distar Renal Tubular Acidosis (dRTA): Epidemiological, diagnostics, clinical follow-up and therapeutical issues. Nephrologists cohort survey outcome. / Acidosis tubular renal distal (ATRd): aspectos epidemiológicos, diagnósticos, de seguimiento clínico y terapéuticos. Resultados de una encuesta a un colectivo de nefrólogos.

BACKGROUND AND OBJECTIVES: dRTA is a genetic or acquired rare disease, characterized by an unability to excrete hydrogens (H+) into urine, hypobicarbonatemia, hyperchloremia, and frequently hypercalciuria and hypokalaemia. Genetic forms are usually diagnosed during the first months of life and its treatment is based on providing alkali supplements in order to prevent long term clinical consequences, particularly chronic kidney disease (described in some cohorts up to 82% of dRTA patients) and the associated bone disease. A 10 queries multi choice closed response survey was designed to know more about epidemiological, diagnostics, clinical management and therapeutical issues of this disease among Spanish nephrologists. MATERIALS AND METHODS: This survey was delivered to the attendees to a scientific meeting on dRTA at the Spanish Nephrology Society congress in 2019. Surveys were collected at the end of this dRTA event. Results were analyzed by using a parametric statistical test, obtaining the percentage of each response for the 10 questions. RESULTS: Among the survey responders, 44.4% and 37.7% did not visit any dRTA patient during the 1st and 3rd last year respectively. When having a suspicious diagnose, confirming genetic diagnostic test is only performed on the 13.3% of cases and pedigree studies only on 11.1%. Only a 26.6% confirms that metabolic control is excellent, good or very good, and 69% of the responders believe that treatment compliance is not bad, bad or very bad. CONCLUSIONS: This survey enhances the fact that dRTA is not a well known entity, satisfaction with metabolic control is poor and compliance is low. All these factors can lead to a higher severity of renal and bone diseases associated to dRTA.

Unidades de Enfermedad Renal Crónica Avanzada en España: una encuesta nacional sobre los estándares de estructura, recursos, resultados y seguridad del paciente / Advanced Chronic Kidney Disease Units in Spain: a national survey on standards of structure, resources, results and patient safety

ANTECEDENTES Y OBJETIVO: Recientemente, se han desarrollado en España las Unidades de Enfermedad Renal Crónica Avanzada (UERCA) con el objetivo de ofrecer una mayor calidad de vida a los pacientes con ERCA, mejorar su supervivencia y disminuir la morbilidad en esta fase de la enfermedad. Al día de hoy, hay poca evidencia en la literatura española e internacional con respecto a la estructura y cómo conseguir estos objetivos en las UERCA. Desde el grupo de trabajo ERCA de la Sociedad Española de Nefrología (SEN) se impulsa este proyecto para mejorar la atención a los pacientes ERCA a través de la definición de estándares de calidad para el funcionamiento de las UERCA. MATERIAL Y MÉTODOS: Se conformó una propuesta inicial de estándares de calidad sobre el funcionamiento de las UERCA a través de la consulta de principales fuentes de referencias y el asesoramiento de un grupo de trabajo de expertos a través de reuniones presenciales y no presenciales. A partir de esta propuesta inicial de estándares, se diseñó y envío una encuesta vía correo electrónico a 121 especialistas de nefrología y profesionales de enfermería con experiencia en UERCA españolas para conocer entre otros, la idoneidad de cada estándar, es decir, su obligatoriedad o recomendación como estándar. Se permitió acceso a la encuesta entre el 16 de julio de 2018, hasta el 26 de septiembre de 2018. RESULTADOS: Participaron un total de 95 (78,5%) profesionales de los 121 que fueron invitados a participar. De éstos, 80 fueron especialistas en nefrología y 15 profesionales de enfermería, obteniéndose una variada representación de profesionales de la geografía española. Tras analizar las opiniones de estos participantes, los estándares quedaron definidos a un total de 68, 37 de ellos (54,4%) obligatorios y 31 de ellos (45,5%) recomendables. Además, se observó que el volumen de pacientes atendidos en las UERCA se sitúa usualmente por encima de los 100 pacientes, y que el criterio de derivación por regla general está por debajo de 25-29 mL/min/1,73 m2 de filtración glomerular. CONCLUSIONES: Este trabajo constituye una primera propuesta de estándares de calidad para el funcionamiento de una UERCA en España. La definición de estos estándares ha permitido establecer las bases para la estandarización de la organización de las UERCA, y trabajar posteriormente en la configuración de un manual de estándares para la acreditación de estas Unidades

BACKGROUND AND OBJECTIVE: Recently, the Advanced Chronic Kidney Disease Units (UERCA, in Spanish) have been developed in Spain to offer a better quality of life to patients with advanced chronic kidney disease (ACKD), improving their survival and reducing morbidity in this phase of the disease. Nowadays, there is not much evidence in the Spanish and international literature regarding the structure and how to achieve these objectives in the UERCA. From the ERCA working group of the Spanish Society of Nephrology (SEN), this project is promoted to improve care for ERCA patients through the definition of quality standards for the operation of the UERCA. MATERIAL AND METHODS: An initial proposal for quality standards concerning the operation of the UERCA was configured through consultation with the main sources of references and the advice of an expert working group through face-to-face and telematic meetings. Base on this initial proposal of standards, a survey was conducted and sent it via email to 121 nephrology specialist and nursing professionals with experience in Spanish UERCA to find out, among others, the suitability of each standards, that is, its mandatory nature or recommendation as standards. The access to the survey was allowed between July 16th, 2018, until September 26th, 2018. RESULTS: A total of 95 (78.5%) professionals participated out of the 121 who were invited to participate. Of these, 80 of the participants were nephrology specialists and 15 nursing professionals, obtaining a varied representation of professionals from the Spanish geography. After analyzing the opinions of these participants, the standards were defined to a total of 68, 37 of them (54.4%) mandatory and 31 of them (45.5%) recommended. Besides, it was observed that the volume of patients attended in the UERCA is usually above 100 patients, and the referral criteria is generally below 25-29 mL/min/1.73 m2 of glomerular filtration. CONCLUSIONS: This work constitutes a first proposal of quality standards for the operation of UERCA in Spain. The definition of these standards has made it possible to establish the bases for the standardization of the organization of UERCA, and to subsequently work on the configuration of a standards manual for the accreditation of ERCA Units

Advanced Chronic Kidney Disease Units in Spain: a national survey on standards of structure, resources, results and patient safety. / Unidades de Enfermedad Renal Crónica Avanzada en España: una encuesta nacional sobre los estándares de estructura, recursos, resultados y seguridad del paciente.

BACKGROUND AND OBJECTIVE: Recently, the Advanced Chronic Kidney Disease Units (UERCA, in Spanish) have been developed in Spain to offer a better quality of life to patients with advanced chronic kidney disease (ACKD), improving their survival and reducing morbidity in this phase of the disease. Nowadays, there is not much evidence in the Spanish and international literature regarding the structure and how to achieve these objectives in the UERCA. From the ERCA working group of the Spanish Society of Nephrology (SEN), this project is promoted to improve care for ERCA patients through the definition of quality standards for the operation of the UERCA. MATERIAL AND METHODS: An initial proposal for quality standards concerning the operation of the UERCA was configured through consultation with the main sources of references and the advice of an expert working group through face-to-face and telematic meetings. Base on this initial proposal of standards, a survey was conducted and sent it via email to 121 nephrology specialist and nursing professionals with experience in Spanish UERCA to find out, among others, the suitability of each standards, that is, its mandatory nature or recommendation as standards. The access to the survey was allowed between July 16th, 2018, until September 26th, 2018. RESULTS: A total of 95 (78.5%) professionals participated out of the 121 who were invited to participate. Of these, 80 of the participants were nephrology specialists and 15 nursing professionals, obtaining a varied representation of professionals from the Spanish geography. After analyzing the opinions of these participants, the standards were defined to a total of 68, 37 of them (54.4%) mandatory and 31 of them (45.5%) recommended. Besides, it was observed that the volume of patients attended in the UERCA is usually above 100 patients, and the referral criteria is generally below 25-29 mL/min/1.73 m2 of glomerular filtration. CONCLUSIONS: This work constitutes a first proposal of quality standards for the operation of UERCA in Spain. The definition of these standards has made it possible to establish the bases for the standardization of the organization of UERCA, and to subsequently work on the configuration of a standards manual for the accreditation of ERCA Units.

Fosfatos de origen vegetal, fitato y calcificaciones patológicas en la enfermedad renal crónica / Plant phosphates, phytate and pathological calcifications in chronic kidney disease

El 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 (AU)

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 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 (AU)

Plant phosphates, phytate and pathological calcifications in chronic kidney disease. / Fosfatos de origen vegetal, fitato y calcificaciones patológicas en la enfermedad renal crónica.

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 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.