Different Perspectives of Spanish Patients and Professionals on How a Dialysis Unit Should Be Designed.

Aim: The opinion of hemodialysis patients, professionals and family members is rarely considered in the design of a hemodialysis unit. Purpose: To know and compare the opinion and preferences of patients, family members and professionals regarding the design of a dialysis unit and the potential activities they believe should be carried out during the session in order to provide architects with real information for the construction of a dialysis center. Patients and Methods: Anonymous and voluntary survey in electronic format addressed to patients, relatives and professionals belonging to the 18 hemodialysis centers of the renal foundation and to ALCER and its different delegations, in relation to leisure activities to be carried out in the dialysis center and preferred design of the treatment room. The results obtained between the patient-family group and the professionals were compared. Results: We received 331 responses, of which 215 were from patients and family members (65%) and 116 (35%) from professionals. The most represented category among professionals was nursing (53%), followed by assistants (24%) and physicians (12.9%). A higher proportion of patients (66%) preferred rooms in groups of 10-12 patients as opposed to professionals who preferred open-plan rooms (p<0.001). The options that showed the most differences between patients and professionals were chatting with colleagues and intimacy (options most voted by patients/families), versus performing group activities and visibility (professionals). Conclusion: The professionals' view of patients' needs does not always coincide with the patients' perception. The inclusion of the perspective of people with kidney disease continues to be a pending issue in which we must improve both patient organizations and professionals, and the opinion of professionals and patients must be included in the design of a dialysis unit and the activities to be developed in it.

Factores asociados a la integración laboral de las personas en tratamiento renal sustitutivo en España / Factors associated with the labor integration of people on renal replacement therapy in Spain

INTRODUCCIÓN: Las personas en tratamiento renal sustitutivo en edad laboral presentan tradicionalmente tasas de empleo significativamente más bajas que la población general. OBJETIVO: Describir la situación laboral de las personas con enfermedad renal crónica en tratamiento renal sustitutivo en España e identificar los factores asociados más significativos. MATERIAL Y MÉTODO: Estudio observacional descriptivo trasversal comparativo de personas en los diferentes tratamientos renales sustitutivos, en edad laboral de 16 a 64 años. Se analizó su situación laboral y otros factores socio-demográficos y socio-económicos, mediante la administración de un cuestionario ad hoc. RESULTADOS: En 437 personas con enfermedad renal crónica avanzada en tratamiento con hemodiálisis, diálisis peritoneal o trasplante. La tasa de empleo fue del 27%, un 84,21% de personas tenían certificado de discapacidad y un 46,45% de incapacidad laboral reconocida. Las personas trasplantadas presentaron mayores ingresos económicos mensuales y las que estaban en diálisis domiciliarios tenían la mayor tasa de empleo (37,64% frente al 27,89% de las personas trasplantadas y el 20,37% de las personas en hemodiálisis en centro). CONCLUSIONES: Las personas en tratamiento renal sustitutivo en edad laboral tienen importantes limitaciones en su acceso al empleo, sin embargo, existen diferencias importantes según sea la opción elegida de tratamiento. La información y toma de decisiones respecto opción del tratamiento renal sustitutivo son claves para el mantenimiento u obtención de un empleo, para su situación económica futura e incluso para el reconocimiento de la incapacidad laboral

INTRODUCTION: People on renal replacement therapy at working age traditionally have significantly lower employment rates than the general population. OBJECTIVE: To describe the employment situation of people with chronic kidney disease on renal replacement therapy in Spain and to identify the significant associated factors. MATERIAL AND METHOD: Observational, descriptive, cross-sectional and comparative study of people in the different renal replacement treatments, during the work period of 16 to 64 years. Their employment situation and other socio-demographic and socio-economic factors were analysed through the use of an ad hoc questionnaire. RESULTS: In 437 people with advanced chronic kidney disease on haemodialysis, peritoneal dialysis or transplantation. The employment rate was 27%, 84.21% of people had a certificate of disability and 46.45% had a recognized incapacity for work. The transplanted persons presented higher monthly economic income. Patients receiving home dialysis had a higher employment rate (37.64% compared to 27.89% of transplant recipients, and 20.37% of people on centre haemodialysis). CONCLUSIONS: People in renal replacement therapy at working age have significant limitations in access to employment. Although, there are important differences depending on the treatment option chosen. Information and decision-making regarding the option of renal replacement treatment are key for maintaining or obtaining a job, for the future economic situation, and even for the recognition of incapacity for work

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

Employment in the patient with chronic kidney disease related to renal replacement therapy.

BACKGROUND: Chronic kidney disease (CKD) is a limiting condition, but they are shown the benefits the work activity occurs in these patients. The modality of renal replacement therapy (RRT) can influence the activity of work. OBJECTIVES: Analyze the employment of people with CKD related to of RRT in which they are: hemodialysis (HD), peritoneal dialysis manual (CAPD), automated peritoneal dialysis (APD) or transplantation (Tx). METHODS: Descriptive analysis of the employment about 243 kidney patients of both sexes between 16 and 64 years, conducting RRT with HD, CAPD, APD or Tx from 8 Spanish hospitals. RESULTS: Only 33.3% of patients with RRT in the working age were employed. Statistically significant differences are observed in the percentage of employed men (40.1%) and females (22.9%), between the average age of the employed (43.5 years) and unoccupied (49.6 years), and in the mean time to treatment of employees (4.8 years) and unoccupied (7.9 years). Finally there are also differences in the percentage of employed persons in the various forms of TSR considered, being much higher in APD patients (47.8%) than in patients on HD (21.7%) having the lowest percent. CONCLUSIONS: Chronic Kidney Disease (CKD) and RRT are a major source of disability. Active patients opt for treatment largely APD, so that almost half of the patients in this modality are working, while in HD only one of every five patients is working.