Search

Maria Dolores Arenas Jiménez,1 Paula Manso,1 Fabiola Dapena,1 David Hernán,1 Jesús Portillo,1 Concepción Pereira,1 Daniel Gallego,2 Juan Carlos Julián Mauro,2 Manuel Arellano Armisen,2,3 Antonio Tombas,4 Iluminada Martin-Crespo Garcia,5 Emilio Gonzalez-Parra,6 Cristina Sanz1 1Renal Foundation, Madrid, Spain; 2National Federation of Associations for the Fight Against Kidney Diseases (ALCER), Madrid, Spain; 3Platform of Patient Organizations (POP), Zaragoza, Spain; 4Association of Renal Patients of Catalonia (ADER), Barcelona, Spain; 5Madrid Association for the Fight Against Kidney Diseases, Madrid, Spain; 6Hospital Foundation Jiménez Diaz, Madrid, SpainCorrespondence: Maria Dolores Arenas Jiménez, Fundación renal Calle Jose Abascal, 42, 1 º izda, Madrid, 28003, Spain, Tel +34-673429833, Email mdarenas@friat.es; lola@olemiswebs.comAim: 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.Plain Language Summary: People with kidney disease on hemodialysis spend 4 hours of their lives three times a week in hemodialysis units. Although the new concept of 21st century medicine gives special prominence to the opinion of patients and family members, the reality is that this is rarely considered when establishing the requirements that a dialysis center should meet.The aim of this study is 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.This is the first survey in Spain that attempts to approach both the opinions of the patients and the professionals working in the units.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 should be improve both patient organizations and professionals, and the opinion of professionals and patients should be included in the design of a dialysis unit and the activities to be developed in it.Keywords: hemodialysis, patient experience, dialysis unit design, preferences, patients, healthcare professionals

Objectives: Chronic kidney disease-associated pruritus (CKD-aP) is underdiagnosed and not fully understood by healthcare professionals, which leads to poor patient management and impacts patients' quality of life (QoL). The aim of this study was to analyse unmet needs in CKD-aP management and explore the attributes/characteristics that the ideal CKD-aP treatment should have from the perspective of a group of nephrologists, hospital pharmacists, nurses, patient representatives, and regional health authorities in Spain. Methods: A descriptive, cross-sectional study was conducted using an e-survey including ad hoc questions (6-point Likert scale) related to unmet needs in CKD-aP and best-worst scaling (BWS) to prioritise the attributes/characteristics of the ideal CKD-aP treatment. The survey was developed from a literature review, a patient focus group, and a multidisciplinary expert committee. Results: A total of 21 people participated, and it was considered, among other aspects, that CKD-aP had a significant impact on patient QoL (4.29/5), but the diagnosis rate and knowledge level of agents involved, as well as current treatment efficacy and safety, were low (1.71/5, 2.19/5, 1.91/5, and 2.67/5, respectively). The attributes "improves overall QoL (physical and mental)", "reduces itch with statistical significance", and "treatment is supported by clinical development/high evidence and has AEMPS (Spanish Agency for Medicines and Medical Devices)-approved indication for pruritus" were selected as the most valued attributes. There was a positive balance between best-worst scores (86-5, 71-2, and 78-13 points, respectively). Conclusions: The results show the need to undertake actions to drive relevant changes in current clinical practice to improve CKD-aP diagnosis and management.

Background: There are evidences of a different employment status between patients undergoing different modalities of renal replacement therapy (RRT)., Objectives: The present study aims to compare the indirect costs associated to morbidity in the following RRT alternatives: hemodialysis in a specialized center (HD), automated peritoneal dialysis (APD), continuous ambulatory dialysis (CAPD), and renal transplant (TX)., Methods: An analysis on indirect costs was implemented following the Human Capital Theory. In total, 243 patients in working age were included (32 CAPD, 46 APD, 83 HD and 82 TX) from 8 hospitals. The potentially productive years of life lost (PPYL), the costs of lost labor productivity (LLPc) for the year 2009 and the total cost of PPYL (PPYLtc) until age of retirement were estimated. All the estimations were adjusted by age, sex rates. Non-parametric analysis (a bootstrap confidence intervals of differences in costs calculated following the simple bias-corrected percentile method -1,000 estimates-) was computed to highlight differences in costs., Results: No significant differences were found in age or sex between groups. LLPc-2009- in HD (6,547€-95% CI: 5,727€-7,366€) was significantly higher (p<.001) than TX (5,079€-95% CI: 4,127€-6,030€) or APD (4,359€-95% CI: 3,064€-5,655€) but not CAPD (5,785€-95% CI: 4,302€-7,269€). PPYLs were: HD 12.58 years-95% CI: 10.42-14.73; TX 10.05-95% CI: 7.45-12.65; APD 6.09-95% CI: 3.43-8.74; CAPD 10.69-95% CI: 6.14-15.23. PPYLtc was higher in HD than in TX, APD or CAPD in all the provided scenarios., Conclusions: TX and, specially, APD are the modalities of RRT with the lowest impact on indirect costs due to morbidity showing higher rates of employment than HD and requiring less disability benefits.