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Chronic kidney disease (CKD) is common and is associated with increased mortality, morbidity and cost. However, insufficient high-quality trial data are available to answer many relevant clinical questions in this field. In addition, a wide range of variable outcomes are used in studies, and often they are incompletely reported. Furthermore, there is a lack of patient-relevant outcomes, such as mortality, morbidity, quality of life, pain, need for dialysis or costs. Common problems with outcome reporting are as follows: choosing the wrong domains to measure; within domains, choosing the wrong measures (invalid surrogates, composite, non-patient relevant); within measures, choosing the wrong/variable metrics; and within metrics, choosing variable presentation methods. With this article, we aim to underline why standardized outcome reporting is key to achieving evidence-based guidance and improving clinical care for patients; highlight the frameworks available for achieving core outcome sets; and starting from these frameworks, we propose steps needed to develop a core outcome set in the field of CKD. We hope that standardized core outcome sets for nephrology will lead to the most important outcome of guideline production, improving outcomes for our patients., (© The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

Background: There is a variation in dialysis withdrawal rates, but reasons for this variation across European countries are largely unknown. We therefore surveyed nephrologists' perceptions of factors concerning dialysis withdrawal and palliative care and explored relationships between these perceptions and reports of whether withdrawal actually occurred in practice., Methods: We developed a 33-item electronic survey, disseminated via an email blast to all European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) members. In our data analyses, we distinguished those respondents who reported occurrence from those reporting no dialysis withdrawal in their unit. With multilevel logistic regression, we investigated the association between respondents' characteristics and perceptions and whether they reported occurrence of dialysis withdrawal or not., Results: Five hundred and twenty-eight nephrologists from 45 countries completed the questionnaire; 42% reported occurrence of withdrawal in their unit in the past year, and 56% perceived that stopping life-prolonging treatment in terminally ill patients was allowed. Few respondents reported presence in their unit of protocols on withdrawal decision making (7%) or palliative care (10%) or the common involvement of a geriatrician in withdrawal decisions (10%). The majority stated that palliative care had not been part of their core curriculum (74%) and that they had not recently attended continuous medical education sessions on this topic (73%). Respondents from Eastern and Southern Europe had a 42 and 40% lower probability, respectively, of reporting withdrawal compared with those from North European countries. Working in a public centre [odds ratio (OR), 2.41; 95% confidence interval (CI), 1.36-4.25] and respondents' perception that stopping life-prolonging treatment in terminally ill patients was allowed (OR, 1.96; 95% CI, 1.23-3.12), that withdrawal decisions were commonly shared between doctor and patient (OR, 1.97; 95% CI, 1.26-3.08) and that palliative care was reimbursed (OR, 1.81; 95% CI, 1.16-2.83) increased the odds of reporting occurrence of withdrawal., Conclusion: Reports of dialysis withdrawal occurrence varied between European countries. Occurrence reports were more likely if respondents worked in a public centre, if stopping life-prolonging treatments was perceived as allowed, if withdrawal decisions were considered shared between doctors and patients and if reimbursement of palliative care was believed to be in place. There is room for improvement regarding protocols on withdrawal and palliative care processes and regarding nephrologists' training and education on end-of-life care., (© The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

This educational paper discusses a variety of indicators that can be used to measure the quality of care in renal medicine. Based on what aspect of care they reflect, indicators can be grouped into four main categories: structure, process, surrogate outcome and outcome indicators. Each category has its own advantages and disadvantages, and we give some pointers on how to balance these pros and cons while taking into account the aim of the measurement initiative. Especially within initiatives that link payment or reputation to indicator measurement, this balancing should be done with utmost care to avoid potential, unintended consequences. Furthermore, we suggest consideration of (i) a causal chain-i.e. subsequent aspects of care connected by evidence-based links-as a starting point for composing a performance indicator set and (ii) adequate case-mix adjustment, not only of (surrogate) outcomes, but also of process indicators in order to obtain fair comparisons between facilities and within facilities over time., (© The Author 2013. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

Background: Worldwide, several bodies produce renal guidelines, potentially leading to duplication of effort while other topics may remain uncovered. A collaborative work plan could improve efficiency and impact, but requires a common approved methodology. The aim of this study was to identify organizational and methodological similarities and differences among seven major renal guideline bodies to identify methodological barriers to a collaborative effort. Methods: An electronic 62-item survey with questions based on the Institute of Medicine standards for guidelines was completed by representatives of seven major organizations producing renal guidelines: the Canadian Society of Nephrology (CSN), European Renal Best Practice (ERBP), Kidney Disease Improving Global Outcome (KDIGO), Kidney Health Australia-Caring for Australians with Renal Insufficiency (KHA-CARI), Kidney Disease Outcome Quality Initiative (KDOQI), Sociedad Latino-Americano de Nefrologia eHipertension (SLANH) and United Kingdom Renal Association (UKRA). Results: Five of the seven groups conduct systematic searches for evidence, two include detailed critical appraisal and all use the GRADE framework. Five have public review of the guideline draft. Guidelines are updated as new evidence comes up in all, and/or after a specified time frame has passed (N = 3). Commentaries or position statements on guidelines published by other groups are produced by five, with the ADAPTE framework (N = 1) and the AGREEII (N = 2) used by some. Funding is from their parent organizations (N = 5) or directly from industry (N = 2). None allow funders to influence topic selection or guideline content. The budgets to develop a full guideline vary from $2000 to $500 000. Guideline development groups vary in size from <5 (N = 1) to 13-20 persons (N = 3). Three explicitly seek patient perspectives, for example, by involving patients in the scoping process, and four incorporate health economic considerations. All provide training in methodology for guideline development groups and six make their methods public. All try to avoid overlapping topics already planned or published by others. There is no common conflict of interest policy. Conclusions: Overall, there is considerable commonality in methods and approaches in renal guideline development by the different organizations, although some procedural differences remain. As the financial and human resource costs of guideline production are high, a collaborative approach is required to maximize impact and develop a sustainable work plan. Coming to consensus on methods and procedures is the first step and appears feasible. [ABSTRACT FROM AUTHOR]

Background Although arteriovenous fistulas (AVFs) are actively promoted, their use at the start of haemodialysis (HD) seems to be decreasing worldwide. In this paper, we describe recent trends in incidence and prevalence of vascular access types in Europe from 2005 to 2009 and their relationship with patient characteristics and survival. Methods Ten European renal registries participating in the ERA-EDTA Registry provided data on incidence (n = 13 044) and/or prevalence (n = 75 715) of vascular access types. We used logistic regression to assess which factors influence the likelihood to be treated with an AVF rather than another type. Results The use of AVFs at the start of HD showed a significant decreasing trend from 42% in 2005 to 32% in 2009 (P < 0.0001), while the use of central venous catheters (CVCs) increased from 58 to 68% (P < 0.0001). A similar evolution pattern was observed for the prevalence; use of AVFs decreased from 66 to 62% and use of CVCs increased from 28 to 32%. There was a large international variation in the use of the different vascular access types. Female patients [adjusted odds ratio: 0.84, 95% confidence interval (CI): 0.78–0.90] and those ≥80 years (0.77, 95% CI: 0.67–0.90) were least likely to start HD with an AVF. Conclusion In Europe, there is a decreasing trend in the use of AVFs and an increasing trend in the use of CVCs at the start and after the start of HD. We cannot explain all between-country variations we found, and more research is needed to clarify how healthcare around vascular access is organized in Europe. [ABSTRACT FROM AUTHOR]

Background: Selection of an appropriate renal replacement modality is of utmost importance for patients with end stage renal disease. Previous studies showed provision of information to and free modality choice by patients to be suboptimal. Therefore, the European Kidney Patients’ Federation (CEAPIR) explored European patients’ perceptions regarding information, education and involvement on the modality selection process. Methods: CEAPIR developed a survey, which was disseminated by the national kidney patient organisations in Europe. Results: In total, 3867 patients from 36 countries completed the survey. Respondents were either on in-centre haemodialysis (53%) or had a functioning graft (38%) at the time of survey. The majority (78%) evaluated the general information about kidney disease and treatment as helpful, but 39% did not recall being told about alternative treatment options than their current one. Respondents were more often satisfied with information provided on in-centre haemodialysis (90%) and transplantation (87%) than with information provided on peritoneal dialysis (79%) or home haemodialysis (61%), and were more satisfied with information from health care professionals vs other sources such as social media. Most (75%) felt they had been involved in treatment selection, 29% perceived they had no free choice. Involvement in modality selection was associated with enhanced satisfaction with treatment (OR 3.13; 95% CI 2.72–3.60). Many respondents (64%) could not remember receiving education on how to manage their kidney disease in daily life. Perceptions on information seem to differ between countries. Conclusions: Kidney patients reported to be overall satisfied with the information they received on their disease and treatment, although information seemed mostly to have been focused on one modality. Patients involved in modality selection were more satisfied with their treatment. However, in the perception of the patients, the freedom to choose an alternative modality showed room for improvement. [ABSTRACT FROM AUTHOR]

The increasing volume of evidence on how to treat kidney patients makes it difficult for nephrologists and renal nurses to keep up-to-date. This potentially widens the gap between what is known about best practice and how daily renal care is provided. Rigorously developed clinical practice guidelines can be important tools to bridge this gap. However, just developing and publishing guidelines does not ensure their use in actual practice. In this paper, we distinguish and illustrate three types of modifiable factors (i.e. barriers) that potentially impede renal healthcare professionals to provide care according to the guidelines: barriers related to knowledge, to attitudes and to behaviour. European Renal Best Practice (ERBP) produces guidelines for care of kidney patients in Europe and neighbouring regions. To facilitate implementation of its guidelines, ERBP aims to optimize ‘guideline implementability’, which regards the intrinsic characteristics of guidelines (i.e. format and content). The last section of this paper describes some of the associated ERBP activities, which are planned or pending. [ABSTRACT FROM AUTHOR]

European Renal Best Practice (ERBP) is the official guidance-providing body of the European Renal Association—European Dialysis and Transplant Association. This paper introduces the mission statement of ERBP, and provides insight on what this implies for guideline production. We will discuss that improving patient outcome does not only require attention to high-quality evidence, but also understanding of the processes of medical decision making. We will advocate that rigorous methodology is the cornerstone of guideline production, but in those cases where this does not retrieve quality evidence, consensus-based guidance might be suitable. Based on its mission statement, ERBP advocates that guidelines should encourage shared decision making. [ABSTRACT FROM AUTHOR]