Advance Care Planning in Spain.

In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain's theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the "Spanish Association of Shared Care Planning" (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.

Consensus document on palliative care in cardiorenal patients.

There is an unmet need to create consensus documents on the management of cardiorenal patients since, due to the aging of the population and the rise of both pathologies, these patients are becoming more prevalent in daily clinical practice. Chronic kidney disease coexists in up to 40%-50% of patients with chronic heart failure cases. There have yet to be consensus documents on how to approach palliative care in cardiorenal patients. There are guidelines for patients with heart failure and chronic kidney disease separately, but they do not specifically address patients with concomitant heart failure and kidney disease. For this reason, our document includes experts from different specialties, who will not only address the justification of palliative care in cardiorenal patients but also how to identify this patient profile, the shared planning of their care, as well as knowledge of their trajectory and the palliative patient management both in the drugs that will help us control symptoms and in advanced measures. Dialysis and its different types will also be addressed, as palliative measures and when the decision to continue or not perform them could be considered. Finally, the psychosocial approach and adapted pharmacotherapy will be discussed.

COVID-19 Vaccination Improved Psychological Distress (Anxiety and Depression Scores) in Chronic Kidney Disease Patients: A Prospective Study.

The purpose of the study is to analyze the impact of vaccination against SARS-CoV-2 on anxiety and depression scores in patients with different modalities of chronic kidney disease. One hundred and seventeen renal patients (50 hemodialysis patients, 13 peritoneal dialysis patients, 32 kidney transplants, and 22 advanced chronic kidney disease patients at pre-dialysis care) were evaluated for depression, anxiety, health-related quality of life (HRQOL), and perceived fears and resources with standardized (Hospital Anxiety and Depression Scale (HADS)) and self-reported questionnaires. The measure points were before vaccination and 15 days after vaccination. The main finding of the study was that there was a decrease in the global mean of normal scores for anxiety and depression symptoms in chronic kidney disease patients post-vaccination. We did not find statistically significant differences in depression or anxiety scores, nor any HRQOL differences between the treatment groups. The three main fears reported by the participants at baseline were those of adverse effects, not getting the vaccine, and lack of information. These findings highlight the potential interest of assessing psychological variables related to the impact of vaccination against SARS-CoV-2. New studies will be required to assess the impact of comprehensive vaccine coverage and its psychological impact.

Cinco cuestiones esenciales para acompañar en el sufrimiento / Five essential questions to accompany in the suffering

El sufrimiento aparece de manera natural y espontánea cuando no tenemos recursos para hacer frente a una situación que se convierte en una amenaza. Acompañar el sufrimiento no es tarea fácil y requiere destrezas, habilidades y conocimientos, así como desarrollo personal. Identificar y abordar el sufrimiento es una de las principales funciones de la práctica clínica. Poder identificar cómo esta experiencia afecta a los profesionales sanitarios, así como generar estrategias para hacerle frente podría protegernos y facilitar el ejercicio de la ayuda. Este artículo tiene como objetivo principal realizar una revisión teórica, acompañada de claves prácticas, para presentar cinco cuestiones previas que configuran un conocimiento esencial para el acompañamiento. Se pretende estimular la reflexión y el aprendizaje de habilidades que nos permitan desarrollar nuestras acciones desde la consciencia y en coherencia con nuestros valores y objetivos

Suffering appears naturally and spontaneously when we do not have resources to deal with a threat. Accompanying suffering is not an easy task and requires skills, abilities and knowledge, as well as personal development. Identifying and addressing suffering is one of the main functions in clinical practice. To be able to identify how this experience affects healthcare professionals, and to generate strategies to face it, could protect us and facilitate the exercise of helping others. The main objective of this article is to realize a theoretical review, accompanied by practical keys, in order to present five previous questions that constitute an essential knowledge for accompaniment. It is intended to stimulate reflection and learning skills that allow us to develop our actions from consciousness and in coherence with our values and objectives

Reflexiones éticas desde la experiencia práctica de la crisis COVID-19 / Ethical reflections from the practical experience of the COVID-19 crisis

El objetivo de este artículo es realizar una reflexión ética en base a documentos generados durante la pandemia por COVID-19, aportando conclusiones sobre lo aprendido y lo que nos falta por aprender. Se desarrollarán seis áreas de acción: priorización de los recursos, consulta presencial y telemedicina, la (des)protección de los profesionales, la atención en los centros de mayores, la respuesta social y la atención en los últimos días. Ante la falta de recursos, la autoridad pública puede establecer criterios que limiten, sin suprimirlo, el derecho a la protección de la salud de algunos. Se puede justificar la asignación según la capacidad de recuperación del paciente, sin discriminar por edad o discapacidad. Las consultas telemáticas ayudan a mantener la relación clínica, pero requieren de tiempo y entrenamiento. La relación clínica tiene exigencias deontológicas, y requiere mejorar la tecnología y las habilidades de relación telemática. La metáfora bélica y del heroísmo genera presión y confusión sobre el alcance del deber, ante la grave desprotección sufrida por los profesionales. Se debe realzar el valor de la interdependencia y la responsabilidad, no "romantizar" el riesgo, y compensar a los profesionales y sus familias. En las residencias de mayores predominan grandes centros, organizados por tareas, con poca autonomía y privacidad. Debemos decidir qué modelos queremos, y podemos pagar, y qué riesgos compartidos asumimos desde valores comunes. La sociedad civil puede responder a las crisis (democracia es "gobierno del pueblo", que debe protagonizar la vida pública, no los políticos). El acompañamiento al morir son derechos reconocidos. Su limitación excepcional no puede ser una privación total. La planificación anticipada requiere hablar de los miedos y los valores con los pacientes y sus familias. Es un proceso deliberativo que debemos recuperar en la era de la COVID-19

The aim of this article was to conduct an ethical reflection based on documents generated during the COVID-19 pandemic, providing conclusions about what has been learned and what we still have to learn. Six areas of action will be developed: prioritization of resources, face-to-face consultation and telemedicine, (un)protection of professionals, care in nursing homes, social response, and last days care. Facing lack of resources, public authority can establish criteria that limit the right to health protection. The allocation can be justified according to the patient's ability to recover, without discriminating by age or disability. Telematic consultation can keep patient-clinician relationship, but requires time and training. The clinical relationship has deontological requirements, and requires improving technology and telematic communication skills. The war metaphor generates pressure and confusion over the scope of duty in the face of the serious lack of protection suffered by professionals. The value of interdependence and responsibility must be enhanced, not "romanticizing" the risk, and compensating professionals and their families. Nursing homes in our country are predominantly large centers, organized by tasks, with little autonomy and privacy. We must decide which models we want and can afford, and which shared risks we assume from common values. Civil society can respond to crises (democracy is the "government of the people", which must begin in public life, not in politicians. Accompaniment at death is a recognized right). Exceptional limitation of resources cannot be total deprivation. Advanced care planning requires talking about fears and values with patients and their families. It is a deliberative process we must recover in the COVID-19 era

Validación de un Cuestionario Multidimensional de Adaptación a la Enfermedad para Pacientes Renales en Diálisis (CMAE-RD) diseñado a partir de un cuestionario para pacientes oncohematológicos / Validation of a Multidimensional Questionnaire to Assess Adaptation to Illness to Renal Patients under Dialysis Treatment designed from a questionnaire from oncohaematologic patients

OBJETIVOS: El objetivo de este trabajo es estudiar las propiedades psicométricas de un cuestionario multidimensional de adaptación a la enfermedad para pacientes con enfermedad renal en diálisis (CMAE-RD). MÉTODOS: Esta herramienta está diseñada para ser administrada por un profesional de la psicología en forma de entrevista semiestructurada y fue diseñado a partir de un cuestionario previo para pacientes oncohematológicos. Un total de 113 pacientes en hemodiálisis fueron entrevistados mediante el CMAE-RD y completaron dos cuestionarios adicionales con propósitos de validación: el HADS (para evaluar ansiedad y depresión) y el CDRISC-2 (para evaluar resiliencia). RESULTADOS: La consistencia interna para las áreas del CMAE-RD estuvo comprendida entre 0,53 y 0,70, y se obtuvieron evidencias de validez relacionada con un criterio externo y concurrente especialmente para las áreas que evaluaban el grado en que el paciente está informado y su estado de ánimo. CONCLUSIONES: CMAE-RD presenta niveles adecuados de fiabilidad y validez, siendo una herramienta útil desde el punto de vista clínico, pues permite evaluar las necesidades y recursos de los pacientes, guiando la intervención psicológica

OBJECTIVES: The present study aims to explore the psychometric properties of a multidimensional questionnaire to assess adaptation to illness in patients with end stage renal disease under hemodialysis (CMAE-RD for its Spanish acronym). METHODS: This instrument was developed to be administered by a psychologist as a semi structured interview and it was adapted from a previous questionnaire for patients with oncohaematologic diseases. A total of 113 patients receiving hemodialysis treatment were interviewed with the CMAE-RD and completed two additional questionnaires with validation purposes: the HADS (to assess anxiety and depression) and the CDRISC-2 (to assess resilience). RESULTS: Internal consistency scores for the areas of the CMAE-RD was comprised between.53 and.70. Evidences of validity related to an external criterion and concurrent validity were obtained for the areas which assess the level of information of the patient and their emotional state. CONCLUSIONS: We conclude that the CMAE-RD shows adequate levels of reliability and validity, being a useful measurement tool from the standpoint of health care, as it allows psychologist the needs and resources of renal patients, providing guidance for psychological intervention

Comunicación consciente para acompañar de forma eficaz: protocolo de 5 pasos / Conscious communication to accompany effectively: protocol of 5 steps

Las personas con enfermedades crónicas y graves, necesitan ser escuchadas, entendidas y atendidas a su ritmo. Los profesionales necesitan herramientas sencillas y eficientes que les faciliten una buena comunicación con sus pacientes, en el menor tiempo posible. OBJETIVO: describir un protocolo sistemático de comunicación en cinco pasos. MÉTODO: Se ha diseñado un enfoque cualitativo basado en la revisión documental, que ha incluido la revisión bibliográfica y de evidencias para apoyar el análisis y poder llegar a conclusiones con la información extraída del proceso. RESULTADO: Como resultado se propone un protocolo básico de comunicación fundamentado en el counselling y en los principios de la bioética moderna, capaz de facilitar las funciones de informar, motivar la adhesión terapéutica, promover cambios de conducta, abordar situaciones de comunicación difícil y, especialmente, de tener un encuentro auténtico con el paciente y su familia. Por conclusión sin comunicación eficaz no hay encuentro, y sin encuentro, la relación clínica entre profesional y paciente se puede convertir en un intercambio de palabras vacías, de imposiciones de tratamientos, que difícilmente el paciente va a cumplir adecuadamente. Los tiempos cambian y la Medicina participativa va encontrando un lugar más adecuado en el entorno clínico

People with chronic and serious diseases, need to be heard, understood and answered at their own pace. Professionals need simple and efficient tools to have good communication with their patients, in the shortest possible time. The aim of this paper is to describe a systematic communication in five steps, protocol based on counselling and on the principles of bioethics, to facilitate the information skills, motivate therapeutic adherence, promote behavioral changes, deal with difficult situations and to have an authentic encounter with the patient and his family. It is concluded that without effective communication there is no encounter, and without encounter, the clinical relationship between professional and patient can become an exchange of empty words, of impositions of treatments, which the patient will hardly adequately comply with. Times change and participatory medicine is finding a more appropriate place in the clinical environment

¿Cómo diseñar, aplicar y evaluar un programa de Mentoring en enfermedad renal crónica? evaluación narrativa del impacto en 6 centros asistenciales / How to design, apply and assess a Mentoring programme in chronic kidney disease: Narrative impact assessment in six health care centres

ANTECEDENTES Y OBJETIVO: La enfermedad renal crónica (ERC) requiere de un proceso de adaptación en el paciente, que se puede facilitar con el apoyo de los profesionales sanitarios, así como por iguales capacitados. El objetivo de este estudio es presentar la puesta en marcha de un programa piloto de paciente mentor para promover la adaptación de los pacientes con ERC. MATERIALES Y MÉTODO: Diseño mixto (cuantitativo y cualitativo) pre-post. El estudio se llevó a cabo en 6 hospitales de España. Los instrumentos utilizados para medir el impacto fueron escalas elaboradas ad-hoc (formato de respuesta escala de Likert de 10 puntos) de satisfacción y adquisición de competencias, así como la creación de grupos focales con 8 pacientes mentores y 10 profesionales sanitarios. Se dividió el programa en 4 fases: 1) Diseño y validación de contenidos del programa manualizado y selección de pacientes mentores; 2) Formación a mentores, satisfacción con la formación y competencias adquiridas por los mentores; 3) Implementación de los grupos de apoyo mutuo y perfil de los asistentes a los grupos de apoyo mutuo, y 4) Evaluación y resultados del programa de Mentoring. RESULTADOS: Se han formado a un total de 39 mentores en habilidades para conducción de grupos, así como para facilitar apoyo emocional. Se han conducido 22 grupos de apoyo con 121 participantes (22% cuidadores). El 65% de los pacientes estaban en consulta de ERC. Un 65% de los pacientes participantes consideraron hacer algún cambio en su estilo de vida tras la asistencia al programa. Todos los ítems que evalúan satisfacción y utilidad han mostrado una puntuación muy elevada, por encima del valor 8,5 sobre 10. CONCLUSIONES: Este es el primer programa manualizado de Mentoring en ERC llevado a cabo de manera simultánea en 6 hospitales españoles. La naturaleza del programa, manualizado y altamente estructurado, permite su replicabilidad minimizando el riesgo de error

BACKGROUND AND OBJECTIVE: Chronic kidney disease (CKD) requires patients to participate in an adaptation process, which may be facilitated with the support of healthcare professionals and trained peers. The objective of this study is to present the implementation of a pilot patient mentoring programme to promote adaptation in patients with CKD. MATERIALS AND METHOD: Pre-test-post-test design (quantitative and qualitative). The study was carried out in six hospitals in Spain. The instruments used to measure impact were ad-hoc scales (10-point Likert scale response format) on satisfaction and skill acquisition, as well as the creation of focus groups with eight patient mentors and 10 healthcare professionals. The programme was split into four phases: 1. Design and validation of the manualised programme's content, and selection of patient mentors; 2. Mentor training, satisfaction with training and skills acquired by the mentors; 3. Implementation of mutual support groups and profile of those attending these mutual support groups; 4. Assessment and results of the Mentoring programme. RESULTS: In total, 39 mentors were trained on group management skills, as well as how to provide emotional support. 22 support groups were held, with 121 participants (22% carers). The 65% of the patients were attending the CKD clinic. 65% of the participating patients considered making some form of lifestyle change after taking part in the programme. All the items assessing satisfaction and usefulness scored very highly, achieving 8.5 out of 10 or above. CONCLUSIONS: This is the first manualised mentoring programme in CKD to be undertaken simultaneously in six Spanish hospitals. The manualised and highly structured nature of the programme make it easy to replicate, minimising the risk of error

Eficacia de la creación de un programa de Escuela de pacientes en la detección de necesidades en pacientes con Poliquistosis Renal Autosómica Dominante / Efficacy of the creation of a patient school program in the detection of needs in patients with autosomal dominant polycystic kidney disease

Introducción: La Poliquistosis Renal Autosómica Dominante es una enfermedad renal crónica responsable del 10% de los casos de insuficiencia renal terminal. La participación y los grupos de apoyo entre iguales son herramientas que mejoran el bienestar, evitando complicaciones y retrasando el avance de la enfermedad. Objetivos: Detectar necesidades informativas, así como recursos de apoyo, en este grupo de pacientes mediante la puesta en marcha de una Escuela de Pacientes con poliquistosis renal autosómica dominante. Material y Método: Se utilizó un diseño mixto (cuantitativo y cualitativo). El estudio se desarrolló mediante cuatro fases: 1) Grupo focal: pacientes con poliquistosis renal y sus cuidadores; 2) Selección de los pacientes expertos; 3) Elaboración de los contenidos del programa de la Escuela de pacientes con poliquitstosis renal autosómica dominante; 4) Pilotaje del programa. Resultados: Se detectaron necesidades de información referentes al tratamiento oral y al afrontamiento de la poliquistosis renal que no están cubiertas por los equipos de nefrología. Conclusiones: La Escuela de Pacientes ha demostrado ser una herramienta útil para detectar necesidades y recursos en pacientes con poliquistosis renal autosómica dominante que han de enfrentarse a una enfermedad crónica donde se requiere la participación del paciente para garantizar la adhesión al tratamiento

Introduction: Autosomal Dominant Polycystic Kidney Disease is a chronic kidney disease responsible for 10% of cases of end-stage renal failure. Participation and peer support groups are tools that improve well-being, avoiding complications and delaying disease progression. Objectives: To detect information needs, as well as support resources, in patients with autosomal dominant polycystic kidney disease trough a Patient School. Material and Method: A mixed design (quantitative and qualitative) was used. The study was developed through four phases: 1) Focus group: patients with autosomal dominant polycystic kidney disease and their caregivers; 2) Selection of expert patients; 3) Preparation of the contents of the program of the Patient School with autosomal dominant polycystic kidney disease; 4) Piloting the program. Results: Information needs regarding oral treatment and coping with autosomal dominant polycystic kidney disease were detected, which are not covered by nephrology teams. Conclusions: Patients School has proven to be a useful tool to detect needs and resources in patients with autosomal dominant polycystic kidney disease who have to face a chronic disease where patient participation is required to ensure adherence to treatment

How to design, apply and assess a Mentoring programme in chronic kidney disease: Narrative impact assessment in six health care centres. / ¿Cómo diseñar, aplicar y evaluar un programa de Mentoring en enfermedad renal crónica? evaluación narrativa del impacto en 6 centros asistenciales.

BACKGROUND AND OBJECTIVE: Chronic kidney disease (CKD) requires patients to participate in an adaptation process, which may be facilitated with the support of healthcare professionals and trained peers. The objective of this study is to present the implementation of a pilot patient mentoring programme to promote adaptation in patients with CKD. MATERIALS AND METHOD: Pre-test-post-test design (quantitative and qualitative). The study was carried out in six hospitals in Spain. The instruments used to measure impact were ad-hoc scales (10-point Likert scale response format) on satisfaction and skill acquisition, as well as the creation of focus groups with eight patient mentors and 10 healthcare professionals. The programme was split into four phases: 1. Design and validation of the manualised programme's content, and selection of patient mentors; 2. Mentor training, satisfaction with training and skills acquired by the mentors; 3. Implementation of mutual support groups and profile of those attending these mutual support groups; 4. Assessment and results of the Mentoring programme. RESULTS: In total, 39 mentors were trained on group management skills, as well as how to provide emotional support. 22 support groups were held, with 121 participants (22% carers). The 65% of the patients were attending the CKD clinic. 65% of the participating patients considered making some form of lifestyle change after taking part in the programme. All the items assessing satisfaction and usefulness scored very highly, achieving 8.5 out of 10 or above. CONCLUSIONS: This is the first manualised mentoring programme in CKD to be undertaken simultaneously in six Spanish hospitals. The manualised and highly structured nature of the programme make it easy to replicate, minimising the risk of error.

Multicenter Validation of the Emotional State Instrument for Dialysis Patients.

BACKGROUND: The Emotional State Instrument for Dialysis Patients (ES-D) is a brief semistructured questionnaire to assess emotional distress in patients undergoing dialysis. It was designed to be administered by a healthcare provider. A previous study showed preliminary indicators of its content and face validity. OBJECTIVE: The aim of the current multicenter study was to explore the ES-D's psychometric properties. METHODS: A total of 605 patients with kidney disease undergoing dialysis (524 hemodialysis and 81 peritoneal dialysis) in 19 Spanish dialysis centers completed the ES-D, along with anxiety, depression (Hospital Anxiety and Depression Scale), and resilience (Brief Resilience Scale) questionnaires. The 75 healthcare providers who performed the assessments completed a satisfaction survey. RESULTS: The ES-D showed adequate internal consistency (α = .73). Correlations between the ES-D scores and the scores for anxiety, depression, and resilience showed evidence of its convergent and concurrent validity. The receiver operating characteristic curve analyses showed that a cutoff of nine detected patients with moderate-to-severe emotional distress. According to these criteria, 35.4% of patients showed emotional distress. No significant differences were found between patients undergoing hemodialysis and peritoneal dialysis. The healthcare providers perceived the ES-D as useful for knowing the patients' emotional state, understanding patients' concerns, and establishing therapeutic relationships. CONCLUSIONS: The ES-D is a useful tool for healthcare providers to explore the emotional dimension of their patients. Thus, its development represents a step forward in the improvement of comprehensive assistance and the quality of life of patients with kidney disease undergoing dialysis.

Evaluación del impacto de un programa de formación en Entrevista Motivacional a enfermería nefrológica / Assessing the impact of a training program in motivational interviewing to nephrology nursing

Introducción: Los profesionales de enfermería de cinco servicios de nefrología recibieron entrenamiento en Entrevista Motivacional mediante un taller de ocho horas centrado en como promover la adhesión al tratamiento en el paciente renal y su familia. El objetivo fue evaluar cambios en: competencia percibida en habilidades comunicativas especificas, respuesta empática espontanea e implantación de las habilidades in vivo medido a través de una rejilla observacional. Material y Método: Diseño pretest-postest sin grupo control. La muestra estaba formada por 46 profesionales del ámbito de la enfermería nefrológica. Resultados: Los resultados muestran cambios en la capacidad percibida de validar al paciente (p<0,031), así como en autorregulación emocional (p<0,014). La respuesta empática espontánea aumentó en los cuatro casos clínicos presentados, pero no llegó a alcanzar significancia estadística (p>0,05). La rejilla observacional, implementada durante el entrenamiento, informó acerca de indicadores de éxito tales como: reducir el tono paternalista, mostrar calma, generar confianza y escuchar de manera activa. Conclusiones: Los resultados son consistentes con otros estudios que evalúan el impacto de los programas de entrenamiento en habilidades de comunicación en nefrología

Introduction: Nursing professionals from five nephrology departments received training in Motivational Interviewing through an eight-hour workshop focused on how to promote adherence to treatment in renal patients and their families. The objective of the present study was to assess changes in: perceived competence in specific communication skills, spontaneous empathic response and readiness to apply in vivo communicative skills measured through an observation grid. Material and Method: Pretest-posttest design without control group. The sample consisted of 46 nephrology nurses. Results: The results show changes in the perceived competence to validate the patient (p<0.031), as well as emotional self-regulation (p<0.014). The empathic spontaneous response increased in the four clinical cases presented, but no statistical significance was reached (p>0.05). The observation grid, implemented during the training, reported on indicators of success such as: reducing the paternalistic tone, showing calm, generating trust and active listening. Conclusions: The results are consistent with other studies that evaluate the impact of communication training programs in nephrology

Improvement in Nutritional Status in Patients With Chronic Kidney Disease-4 by a Nutrition Education Program With No Impact on Renal Function and Determined by Male Sex.

OBJECTIVE: Protein-energy wasting (PEW) is associated with increased morbidity and mortality and a rapid deterioration of kidney function in patients with chronic kidney disease (CKD). However, there is little information regarding the effect of nutrition intervention. The aims of this study were to evaluate the efficacy and safety of a nutrition education program (NEP) in patients with nondialysis dependent CKD (NDD-CKD), based on the diagnostic criteria for PEW proposed by the International Society of Renal Nutrition and Metabolism. The design of the study was a 6-month longitudinal, prospective, and interventional study. The study was conducted from March 2008 to September 2011 in the Nephrology Department of La Paz University Hospital in Madrid, Spain. SUBJECTS: A total of 160 patients with NDD-CKD started the NEP, and 128 finished it. INTERVENTION: The 6-month NEP consisted of designing an individualized diet plan based on the patient's initial nutritional status, and 4 nutrition education sessions. MAIN OUTCOME MEASURES: Changes in nutritional status (PEW) and biochemical, anthropometric and body composition parameters. RESULTS: After 6 months of intervention, potassium and inflammation levels decreased, and an improved lipid profile was found. Body mass index lowered, with increased muscle mass and a stable fat mass. Men showed increased levels of albumin and prealbumin, and women showed decreased proteinuria levels. The prevalence of PEW decreased globally (27.3%-10.9%; P = .000), but differently in men (29.5%-6.5%; P = .000) and in women (25.4%-14.9%; P = .070), 3 of the women having worsened. Kidney function was preserved, despite increased protein intake. CONCLUSION: The NEP in NDD-CKD generally improved nutritional status as measured by PEW parameters, but individual poorer results indicated the need to pay special attention to female sex and low body mass index at the start of the program.

The Communication and Bioethical Training (CoBiT) Program for assisting dialysis decision-making in Spanish ACKD units.

Healthcare professionals currently working in Advanced Chronic Kidney Disease (ACKD) units must cope with difficult situations regarding assisting patients with the dialysis decision-making process, and they are often untrained for these conversations. Although we have evidence from the literature that these skills can be learned, few professionals feel confident in this area. A Communication and Bioethical Training (CoBiT) Program for ACKD staff (physicians, nurses and allied health professionals) was developed to improve their ability and self-confidence in conducting these conversations. A four-stage study was conducted: (1) development of the CoBiT program, beginning with the creation of an interdisciplinary focus group (N = 10); (2) design of a questionnaire to assess self-confidence based on the areas identified by the focus group. The face validity of the instrument was tested using an inter-judge methodology (N = 6); (3) design of the format and contents of the program; (4) piloting the program. Thirty-six health professionals took an 8-h workshop based on role-playing methodology. Participants assessed their self-confidence in their communication skills before and after the program using self-report measures. The results show that after the program, participants reported significantly higher levels of self-confidence measured with a five-point Likert scale (p < 0.001). Participants felt that communication with colleagues of other professions significantly increased after the workshop (p = 0.004). The CoBiT program improves ACKD Unit healthcare professionals' self-confidence in their ability to perform a specific communication task.

Desarrollo de un instrumento para la evaluación del malestar emocional para pacientes renales en diálisis / Development of a questionnaire to assess emotional distress in renal patients undergoing dialysis

Objetivo: Actualmente no existen herramientas validadas para evaluar el malestar emocional en pacientes con enfermedad renal crónica, pese a su alta prevalencia en todas las etapas de la patología. Este trabajo describe el desarrollo de un instrumento breve semiestructurado para la Evaluación del malestar Emocional de los pacientes renales en Diálisis (EE-D). Método: El EE-D incluye cinco preguntas con distintos formatos de respuesta (dicotómico, Likert y preguntas abiertas) para evaluar tristeza, ansiedad, preocupaciones, recursos para afrontar la enfermedad, signos externos de malestar y observaciones. Los ítems de la primera versión se sometieron a un estudio interjueces (N= 10). Posteriormente se realizó un estudio piloto multicéntrico (N= 25 pacientes en 5 hospitales). Resultados: Tras el estudio interjueces un ítem fue eliminado, y otro añadido. Tras el piloto no hubo modificaciones. La puntuación media (sobre 10) fue 4,16 (DT: 3,41) en tristeza y 3,68 (DT: 3,48) en ansiedad. El 48% refirió preocupaciones familiares, el 44% preocupaciones sobre su estado emocional-psicológico y el 40% sobre su enfermedad/tratamientos. Los principales recursos identificados fueron la esperanza en la posibilidad de trasplante y el apoyo social. A juicio de enfermería el 24% presentan expresión facial de malestar y el 16% otros signos de malestar. Discusión: El EE-D muestra unas garantías psicométricas preliminares. Ha sido distribuido en las Unidades de Diálisis de todo el territorio nacional con el objetivo de su implementación clínica en un marco investigador, lo que permitirá el desarrollo de futuros estudios de validación multicéntricos (AU)

Objective: Currently there are no validated assessment tools to explore emotional distress in patients with chronic kidney disease, even though it is very prevalent in all the phases of the disease. This study describes the development of a brief semi-structured interview to assess emotional distress in renal patients undergoing Dialysis (EE-D). Method: The EE-D includes five questions with different response formats (dichotomized, Likert scales and open-questions) to assess sadness, anxiety, concerns, and resources to cope with illness, external signs of distress and other considerations. An interjudge process was used with the items of the first version of the EE-D (N= 10 experts). Hereafter a pilot multicentric study was carried on (N= 25 patients in 5 hospitals). Results: After the interjudge analysis one item was removed from the EE-D, and one item was added. After the pilot study there were no changes in the tool. The average score (range 0 to 10) in sadness was 4.16 (SD= 3.41) and 3.68 (SD= 3.48) in depression. A total of 48% of the participants reported family concerns, 44% concerns about their psychological/ emotional state and 40% about their illness/treatments. The most important resources to cope with the illness were their hope in the possibility of a transplantation and their social support. According to the nursing staff who conducted the interviews 24% of the patients showed facial expression of distress and 16% other external signs of distress. Discussion: The EE-D has shown adequate preliminary psychometric properties. It has been recently distributed to all the dialysis units in Spain with the objective of conducting a multicentric validation study (AU)

The impact of specialty practice nursing care on health-related quality of life in persons with ostomies.

PURPOSE: Ostomy patients suffer significant physiological challenges that can affect psychological variables and health-related quality of life (HRQOL). The purpose of this study was to compare HRQOL in a group of patients cared for in hospitals that employed nurses specializing in ostomy care versus patients who were cared for at hospitals that did not employ nurses specializing in ostomy care. DESIGN: Multicenter, quasi-experimental, prospective, longitudinal study. SUBJECTS AND SETTING: This is a national study set in Spain. We collected data from 402 ostomy patients in health centers among 16 Spanish regions from March 2012 to June 2013. The average age of the patients was 61.3 ± 13.71 years (mean ± SD). METHODS: Questionnaires were administered by the investigators prior to and 3 months after the ostomy surgery. Two groups of patients were compared: patients in group 1 were treated by nurses specializing in ostomies; patients in group 2 were not treated by an ostomy nurse specialist. Two validated scales were used to determine HRQOL: EQ-5 D (Spanish version) and the Montreux questionnaire. RESULTS: Patients in group 1 adapted better to their ostomies than group 2. They exhibited less concern with appearance; increased comfort with cleaning, changing, and throwing away ostomy bags; and decreased pain and pain frequency. They reported less fearfulness; improvements in sleep, weight concerns, and strength; and better overall health, leading to a greater percentage of patients able to lead a normal life (P < .05). Sexual activity was the only variable that worsened in both groups, but it was more satisfactory at postoperation stage in group 1 (P = .015). CONCLUSIONS: Patients who received specialized ostomy care experienced significant improvements in HRQOL compared to patients who were not cared for by specialist nurses. Our findings strongly suggest that patients undergoing ostomy surgery should be provided access to a nurse specialist in ostomy care since our results highlight the potential benefit promoting the HRQOL of patients.

Las cartas de condolencia: marco conceptual y protocolo / Letters of condolence: conceptual framework and protocol

Las cartas de condolencia tienen sentido como herramienta terapéutica más allá de ser una expresión de cercanía, si están dentro de un marco conceptual adecuado. El trabajo que presentamos tiene como objetivo conocer el estado de la cuestión en la literatura y analizar los beneficios de este instrumento según el duelo de James Worden y la necesidad de prevenir la aparición de duelo complicado. Unido a una fundamentación teórica, se necesitan unas pautas y claves que puedan ayudar a los profesionales a organizar y redactar este tipo de cartas. Por ello, como resultado del análisis de la literatura y de años de experiencia clínica en el trabajo de duelo en los Servicios de Hematología y Nefrología del Hospital Universitario La Paz, se ha desarrollado un protocolo, que entendemos útil y práctico para este fin. Concluimos que si los profesionales hemos sido una parte relevante en el proceso de enfermedad, también tenemos la oportunidad de serlo en el proceso de duelo

Letters of condolence, are more like a therapeutic tool than an expression of nearness, if they are within an appropiate conceptual framework. The aims of the present work is to find out the state of the art heart of the matter in the literature, and to analyse the benefits of this tool based on the grief model by James Worden and the need to prevent complicated grief. In addition to this theoretical basis, professionals need keys and guidelines to organize and write these kinds of letters. For this reason a protocol is presented that may be useful and practical for this purpose. It has been prepared after reviewing literature and years of clinical experience in grief therapy in the Haematology and Nephrology Departments of Hospital Universitario La Paz. It concludes that the professionals who are a relevant part of the illness process, also have the opportunity of being part of the grief process

El papel de la depresión, la ansiedad, el estrés y la adhesión al tratamiento en la calidad de vida relacionada con la salud en pacientes en diálisis: revisión sistemática de la literatura / The role of depression, anxiety, stress and adherence to treatment in dialysis patients’ health-related quality of life: a systematic review of the literature

La calidad de vida relacionada con la salud (CVRS) ha sido ampliamente estudiada en el ámbito de los pacientes en diálisis. Sin embargo, son pocos los trabajos que incluyen las relaciones de variables psicosociales y de adhesión al tratamiento con la CVRS. El objetivo de esta revisión es sintetizar sistemáticamente la información disponible sobre el rol que las variables psicológicas (depresión, ansiedad y estrés) y la adhesión al tratamiento tienen sobre la CVRS de los pacientes en diálisis a través de una revisión narrativa sistemática. Se seleccionaron los estudios que incluyeron y relacionaron en sus resultados variables psicológicas (al menos una de ellas: depresión, ansiedad o estrés percibido), adhesión al tratamiento y CVRS en población adulta en tratamiento con diálisis debido a su enfermedad renal crónica avanzada (ERCA). Los estudios incluidos debían incorporar en su protocolo de evaluación instrumentos estandarizados. Se efectuaron búsquedas en las bases de datos MedLINE y PsycINFO de enero de 2002 a agosto de 2012. Se incluyeron 38 estudios en esta revisión y fueron sometidos a una evaluación de la calidad metodológica. La revisión ha permitido observar que un 100 % de los trabajos identifica una asociación negativa entre indicadores de ansiedad, depresión y estrés con la CVRS, reflejando que dichas variables son factores de riesgo para la calidad de vida. La adhesión al tratamiento ha sido asociada con factores psicológicos y con la CVRS en un 8 % (N = 3) de los estudios incluidos, mostrándose un factor de protección para la calidad de vida en el 66 % de los estudios (2 de 3) que incluyeron la variable adhesión. Considerando el efecto de dichas variables sobre la CVRS, es importante detectar precozmente indicadores de ansiedad, estrés y depresión o dificultades para cumplir con el tratamiento en la población ERCA en diálisis. Esto permitirá intervenir a tiempo antes de que la CVRS se vea mermada (AU)

Health-related quality of life (HRQOL) has been widely studied in the field of dialysis patients. However, there are few studies that include relationships of psychosocial variables and adherence to treatment with HRQOL. The aim of this review is to systematically synthesise available information on the role that psychological variables (depression, anxiety and stress) and adherence to treatment have on HRQOL of dialysis patients through a systematic narrative review. We selected studies that included and related, in their results psychological variables (at least one of the following: depression, anxiety or perceived stress), adherence to treatment and HRQOL in adults on dialysis due to advanced chronic kidney disease (ACKD). The studies included had to incorporate standardised instruments into their assessment protocol. We searched the MEDLINE and PsycINFO databases from January 2002 to August 2012. Thirty-eight studies were included in this review and we assessed their methodological quality. The review revealed that 100% of the studies identified a negative association between indicators of anxiety, depression and stress and HRQL, indicating that these variables are risk factors for quality of life. Adherence to treatment was associated with psychological factors and HRQOL in 8% (N=3) of the studies included and has been demonstrated to be a protective factor for quality of life in 66% of studies (2 of 3) that included this variable. Considering the effect of these variables on HRQOL, it is important to screen for early indicators of anxiety, stress and depression or difficulties in complying with treatment in the ACKD population on dialysis. This will allow preventive interventions to be carried out before HRQOL deteriorates (AU)

The role of depression, anxiety, stress and adherence to treatment in dialysis patients’ health-related quality of life: a systematic review of the literature.

Health-related quality of life (HRQOL) has been widely studied in the field of dialysis patients. However, there are few studies that include relationships of psychosocial variables and adherence to treatment with HRQOL. The aim of this review is to systematically synthesise available information on the role that psychological variables (depression, anxiety and stress) and adherence to treatment have on HRQOL of dialysis patients through a systematic narrative review. We selected studies that included and related, in their results psychological variables (at least one of the following: depression, anxiety or perceived stress), adherence to treatment and HRQOL in adults on dialysis due to advanced chronic kidney disease (ACKD). The studies included had to incorporate standardised instruments into their assessment protocol. We searched the MEDLINE and PsycINFO databases from January 2002 to August 2012. Thirty-eight studies were included in this review and we assessed their methodological quality. The review revealed that 100% of the studies identified a negative association between indicators of anxiety, depression and stress and HRQL, indicating that these variables are risk factors for quality of life. Adherence to treatment was associated with psychological factors and HRQOL in 8% (N=3) of the studies included and has been demonstrated to be a protective factor for quality of life in 66% of studies (2 of 3) that included this variable. Considering the effect of these variables on HRQOL, it is important to screen for early indicators of anxiety, stress and depression or difficulties in complying with treatment in the ACKD population on dialysis. This will allow preventive interventions to be carried out before HRQOL deteriorates.

Evaluación del impacto de cartas de condolencia en familiares en duelo / Assessment of the impact of condolence letters on bereaved families

OBJETIVOS: Evaluar el impacto emocional y la utilidad percibida de las cartas de condolencia en familiares de pacientes fallecidos en los servicios de nefrología y hematología. MÉTODO: Estudio prospectivo con una única medida en forma de entrevista telefónica semiestructurada. Cuestionario elaborado ad hoc. Las variables se evaluaban de forma independiente. La muestra consta 102 muertes y 82 dolientes. RESULTADOS: Un 15% de la muestra refiere haber sentido malestar al recibir la carta y el 100% de la muestra sintió bienestar (categorías no excluyentes), con emociones como gratitud (42,5%), alegría (40%), orgullo (10%) y sorpresa (7,5%). El 96,3% compartió la carta con el entorno. El 98,8% refiere que la carta le ha sido útil. Los pacientes renales son mayores en el momento del fallecimiento (U = 599,00; p < 0,001), han pasado más años en seguimiento por el servicio (χ2 = 19,40; p < 0,001) y responden con mayor frecuencia a la carta de condolencia a través de llamadas telefónicas, visitas al servicio o tarjetas postales (χ2 = 5,30; p < 0,001). No se han encontrado diferencias estadísticamente significativas en relación con los resultados del impacto de la carta entre los familiares de los 2 servicios. DISCUSIÓN: El impacto de la carta ha producido bienestar en todos los familiares y malestar en un 15% de la muestra. Se impone la necesidad de considerar en el duelo emociones opuestas pero no incompatibles. Conocer esta ambivalencia propia de los procesos de pérdida ayudará a la normalización de la misma

OBJECTIVES: To assess the emotional impact and perceived usefulness of condolence letters in families of patients who died in the hospital Nephrology and Haematology departments. Method: A prospective study was conducted with a single one measure in the form of a semistructured telephone interview. The questionnaire was constructed ad hoc. Variables were assessed independently. The sample consisted of 102 deceased and 82 grievers. RESULTS: Of the total responses 15% related to have felt discomfort on receiving the letter and100% of the sample (non-exclusive percentages) were comforted, reporting emotions such as, gratitude (42.5%) happiness (40%), pride (10%), and surprise (7.5%). The large majority (96.3%)shared the letter with those around them, and 98.8% said that the letter was useful. The patients with kidney disease were older at time of death (U = 599.00; P=.008), were attended for more years in the department (2 = 19. ,40; P<.001) and their families responded more frequently to the condolence letter through phone calls, visits to the department, or by post card (2 = 5.30;P<.021). The difference between the results of the impact of the letter on both departments was not statistically significant. DISCUSSION: The impact of the letter gave comfort to all the families, and discomfort in 15%of the sample. It shows the need to consider the opposite, but not incompatible emotions, in bereavement. Awareness of this ambivalence, which is typical in the grieving process, will help to normalise it