The role of kidney registries in expediting large-scale collection of patient-reported outcome measures for people with chronic kidney disease

In this issue of Clinical Kidney Journal, Van der Willik et al. report findings from a pilot study where they introduced collection of patient-reported outcome measures (PROMs) into routine kidney care in Dutch dialysis centres. It is comparable to a registry-led PROMs initiative in Sweden, published in Clinical Kidney Journal in 2020. Both studies reported low average PROMs response rates with substantial between-centre variation, and both identified suboptimal patient and staff engagement as a key barrier to implementing PROMs in routine care for people with chronic kidney disease (CKD). This suggests that national kidney registries could be well placed to facilitate large-scale collection of PROMs data, but that they may require additional guidance on how to do this successfully. In this editorial, we discuss the current state-of-play of PROMs collection by kidney registries and provide an overview of what is (un)known about the feasibility and effectiveness of PROMs in CKD and other conditions. We anticipate that the fast-growing evidence base on whether, and how, PROMs can be of value in CKD settings will expedite registry-based PROMs collection, which will ultimately lead to more valuable and person-centred services and to enhanced health and well-being of people with CKD

How, for Whom, and in Which Contexts or Conditions Augmented and Virtual Reality Training Works in Upskilling Health Care Workers: Realist Synthesis

BACKGROUND: Using traditional simulators (eg, cadavers, animals, or actors) to upskill health workers is becoming less common because of ethical issues, commitment to patient safety, and cost and resource restrictions. Virtual reality (VR) and augmented reality (AR) may help to overcome these barriers. However, their effectiveness is often contested and poorly understood and warrants further investigation. OBJECTIVE: The aim of this review is to develop, test, and refine an evidence-informed program theory on how, for whom, and to what extent training using AR or VR works for upskilling health care workers and to understand what facilitates or constrains their implementation and maintenance. METHODS: We conducted a realist synthesis using the following 3-step process: theory elicitation, theory testing, and theory refinement. We first searched 7 databases and 11 practitioner journals for literature on AR or VR used to train health care staff. In total, 80 papers were identified, and information regarding context-mechanism-outcome (CMO) was extracted. We conducted a narrative synthesis to form an initial program theory comprising of CMO configurations. To refine and test this theory, we identified empirical studies through a second search of the same databases used in the first search. We used the Mixed Methods Appraisal Tool to assess the quality of the studies and to determine our confidence in each CMO configuration. RESULTS: Of the 41 CMO configurations identified, we had moderate to high confidence in 9 (22%) based on 46 empirical studies reporting on VR, AR, or mixed simulation training programs. These stated that realistic (high-fidelity) simulations trigger perceptions of realism, easier visualization of patient anatomy, and an interactive experience, which result in increased learner satisfaction and more effective learning. Immersive VR or AR engages learners in deep immersion and improves learning and skill performance. When transferable skills and knowledge are taught using VR or AR, skills are enhanced and practiced in a safe environment, leading to knowledge and skill transfer to clinical practice. Finally, for novices, VR or AR enables repeated practice, resulting in technical proficiency, skill acquisition, and improved performance. The most common barriers to implementation were up-front costs, negative attitudes and experiences (ie, cybersickness), developmental and logistical considerations, and the complexity of creating a curriculum. Facilitating factors included decreasing costs through commercialization, increasing the cost-effectiveness of training, a cultural shift toward acceptance, access to training, and leadership and collaboration. CONCLUSIONS: Technical and nontechnical skills training programs using AR or VR for health care staff may trigger perceptions of realism and deep immersion and enable easier visualization, interactivity, enhanced skills, and repeated practice in a safe environment. This may improve skills and increase learning, knowledge, and learner satisfaction. The future testing of these mechanisms using hypothesis-driven approaches is required. Research is also required to explore implementation considerations

Electronic collection of patient-reported outcomes to improve kidney care:benefits, drawbacks, and next steps

Kidney services worldwide are increasingly using digital health technologies to deliver care. This includes kidney electronic patient-reported outcome (ePRO) systems: ambulatory digital technologies that enable the capture of PRO data electronically from people with kidney disease, remotely and in real-time to be shared with their kidney care team. Current kidney ePRO systems commonly aim to support the monitoring and management of symptoms in patients with kidney disease. The majority have thus far only been implemented in research settings and are not yet routinely used in clinical practice, leaving their readiness for real-world implementation largely unknown. Compared to paper-based PRO collection, ePRO systems have certain advantages, which we categorised as efficiency benefits (e.g., lower administrative burden), direct patient care benefits (e.g., automated PRO-based patient education), and health system and research benefits (e.g., collecting ePRO data once for multiple purposes). At the same time, kidney ePRO systems come with drawbacks, such as their potential to exacerbate existing inequities in care and outcomes and to negatively affect staff burden and patients’ experience of kidney care. Areas that hold promise for expediting the development and uptake of kidney ePRO systems at local, organisational, and national level, include harnessing national kidney registries as enabling infrastructures; using novel data-driven technologies (e.g., computerised adaptive test systems, configurable dashboards); applying implementation science and action research approaches to enhance translation of ePRO research findings into clinical practice; and engaging stakeholders including patients and carers, healthcare professionals, policy makers, payers, ePRO experts, technology providers, and organisations that monitor and improve the quality of kidney services

Upskilling health and care workers with augmented and virtual reality: protocol for a realist review to develop an evidence-informed programme theory.

From Europe PMC via Jisc Publications RouterHistory: ppub 2021-07-01, epub 2021-07-05Publication status: PublishedIntroductionAugmented reality (AR) and virtual reality (VR) are increasingly used to upskill health and care providers, including in surgical, nursing and acute care settings. Many studies have used AR/VR to deliver training, providing mixed evidence on their effectiveness and limited evidence regarding contextual factors that influence effectiveness and implementation. This review will develop, test and refine an evidence-informed programme theory on what facilitates or constrains the implementation of AR or VR programmes in health and care settings and understand how, for whom and to what extent they 'work'.Methods and analysisThis realist review adheres to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) standards and will be conducted in three steps: theory elicitation, theory testing and theory refinement. First, a search will identify practitioner, academic and learning and technology adoption theories from databases (MEDLINE, Scopus, CINAHL, Embase, Education Resources Information Center, PsycINFO and Web of Science), practitioner journals, snowballing and grey literature. Information regarding contexts, mechanisms and outcomes will be extracted. A narrative synthesis will determine overlapping configurations and form an initial theory. Second, the theory will be tested using empirical evidence located from the above databases and identified from the first search. Quality will be assessed using the Mixed Methods Appraisal Tool (MMAT), and relevant information will be extracted into a coding sheet. Third, the extracted information will be compared with the initial programme theory, with differences helping to make refinements. Findings will be presented as a narrative summary, and the MMAT will determine our confidence in each configuration.Ethics and disseminationEthics approval is not required. This review will develop an evidence-informed programme theory. The results will inform and support AR/VR interventions from clinical educators, healthcare providers and software developers. Upskilling through AR/VR learning interventions may improve quality of care and promote evidence-based practice and continued learning. Findings will be disseminated through conference presentations and peer-reviewed journal articles

Patients' perceptions of information and education for renal replacement therapy: an independent survey by the European Kidney Patients' Federation on information and support on renal replacement therapy.

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

THE EXPERIENCE OF CHRONIC KIDNEY DISEASE PATIENTS: THE RESULTS OF THE 2017 UK RENAL REGISTRY / KIDNEY CARE UK CHRONIC KIDNEY DISEASE PATIENT REPORTED EXPERIENCE MEASURE

© 2018 The Author(s). This an open access work distributed under the terms of the Creative Commons Attribution Licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.PURPOSE: The UK Renal Registry (UKRR) and Kidney Care UK’s (KCUK) Chronic Kidney Disease Patient Reported Experience Measure (CKDPREM) was developed by patients, academics and clinicians in 2016. The CKDPREM was designed to provide clinical directors with information about their services from the user perspective, inform quality improvement initiatives and contribute to research. Following a pilot of over 8,000 patients in 2016, and subsequent validation, the UKRR surveyed renal units in 2017 using the revised CKDPREM; this abstract reports the results. METHODS: CKDPREM consists of 50 items across 13 domains covering patient experience of their renal unit, kidney disease and treatment. There are six demographic questions including age, sex, ethnicity and modality. The CKDPREM was distributed to all renal units in England and Wales in July 2017, with accompanying survey guidance and support provided to invite outpatient, pre-dialysis, dialysis and transplant renal patients to complete the CKDPREM online or in hard copy format. The survey was provided online in Welsh, Gujarati and Urdu as well as in English. Patients participated anonymously, returning hard copy CKDPREMs to their unit in return boxes or directly to the UKRR by post. Experience was scored on a scale of 1 (negative) to 7 (positive), and the mean score for all questions was estimated for each respondent. Analysis was conducted at individual unit and aggregate centre level (aggregate being the main hospital and all of its satellite units). Unit and centre means were estimated across respondents for that unit or centre. Patient characteristics were evaluated by comparing mean scores, and via regression models.RESULTS11,027 analysable responses to the CKDPREM were received from 56 centres incorporating 231 units in total. Demographically, respondents represented the patient population as a whole, although there were relatively low numbers of respondents in the pre-dialysis (15%) and transplant (14%) groups. Patient experience was high (6.3 out of 7) but with significant variation between centres. The largest variation was seen in Fluid and Diet (20%), Sharing Decisions (21%), Needling (29%, a new domain) and Transport (52%). More consistent experience was reported by patients for Access to the Team (11%), Privacy and Dignity (13%), and Scheduling and Planning (10%), however the mean difference between the best and worst centre remains greater than 10%. Patient characteristics contributed little to variation; only differences smaller than 10% (.7) of the scale range were seen (men and women, age, type or location of treatment, and ethnicity). Variation was instead explained by differences between centres, with ranges of mean scores from .73 (Scheduling and Planning) to 3.7 (Transport). CONCLUSIONS: Participation in the CKDPREM increased in 2017 compared to 2016, suggesting that post-validation changes made to the 2016 version of the CKDPREM have worked well. The outcome of the 2017 CKDPREM offers significant insight into renal patient experience. Importantly, the biggest factor driving variation in patient experience is the treating centre, and not patient characteristics. Sharing Decisions and Transport are consistently identified as areas with large variation (in both 2016 and 2017) and Scheduling and Planning with the lowest variation. UKRR and KCUK will continue to run the CKDPREM on an annual basis from late spring 2018 and also be making a short form version available.Peer reviewedFinal Accepted Versio

Diagnosis and treatment of hyponatremia : a systematic review of clinical practice guidelines and consensus statements

Background: Hyponatremia is a common electrolyte disorder. Multiple organizations have published guidance documents to assist clinicians in managing hyponatremia. We aimed to explore the scope, content, and consistency of these documents. Methods: We searched MEDLINE, EMBASE, and websites of guideline organizations and professional societies to September 2014 without language restriction for Clinical Practice Guidelines (defined as any document providing guidance informed by systematic literature review) and Consensus Statements (any other guidance document) developed specifically to guide differential diagnosis or treatment of hyponatremia. Four reviewers appraised guideline quality using the 23-item AGREE II instrument, which rates reporting of the guidance development process across six domains: scope and purpose, stakeholder involvement, rigor of development, clarity of presentation, applicability, and editorial independence. Total scores were calculated as standardized averages by domain. Results: We found ten guidance documents; five clinical practice guidelines and five consensus statements. Overall, quality was mixed: two clinical practice guidelines attained an average score of > 50% for all of the domains, three rated the evidence in a systematic way and two graded strength of the recommendations. All five consensus statements received AGREE scores below 60% for each of the specific domains. The guidance documents varied widely in scope. All dealt with therapy and seven included recommendations on diagnosis, using serum osmolality to confirm hypotonic hyponatremia, and volume status, urinary sodium concentration, and urinary osmolality for further classification of the hyponatremia. They differed, however, in classification thresholds, what additional tests to consider, and when to initiate diagnostic work-up. Eight guidance documents advocated hypertonic NaCl in severely symptomatic, acute onset ( 48 h) or asymptomatic cases, recommended treatments were NaCl 0.9%, fluid restriction, and cause-specific therapy for hypovolemic, euvolemic, and hypervolemic hyponatremia, respectively. Eight guidance documents recommended limits for speed of increase of sodium concentration, but these varied between 8 and 12 mmol/L per 24 h. Inconsistencies also existed in the recommended dose of NaCl, its initial infusion speed, and which second line interventions to consider. Conclusions: Current guidance documents on the assessment and treatment of hyponatremia vary in methodological rigor and recommendations are not always consistent

Interference by new-generation mobile phones on critical care medical equipment

GPRS, UMTS en medische apparatuur in het ziekenhui

Willingness to participate in a randomized trial comparing catheters to fistulas for vascular access in incident hemodialysis patients: an international survey of nephrologists

BACKGROUND: Current guidelines favor fistulas over catheters as vascular access. Yet, the observational literature comparing fistulas to catheters has important limitations and biases that may be difficult to overcome in the absence of randomization. However, it is not clear if physicians would be willing to participate in a clinical trial comparing fistulas to catheters. OBJECTIVES: We also sought to elicit participants' opinions on willingness to participate in a future trial regarding catheters and fistulas. DESIGN: We created a three-part survey consisting of 19 questions. We collected demographic information, respondents' knowledge of the vascular access literature, appropriateness of current guideline recommendations, and their willingness to participate in a future trial. SETTING: Participants were recruited from Canada, Europe, Australia, and New Zealand. PARTICIPANTS: Participants include physicians and trainees who are involved in the care of end-stage renal disease patients requiring vascular access. MEASUREMENTS: Descriptive statistics were used to describe baseline characteristics of respondents according to geographic location. We used logistic regression to model willingness to participate in a future trial. METHODS: We surveyed nephrologists from Canada, Europe, Australia, and New Zealand to assess their willingness to participate in a randomized trial comparing fistulas to catheters in incident hemodialysis patients. RESULTS: Our results show that in Canada, 86 % of respondents were willing to participate in a trial (32 % in all patients; 54 % only in patients at high risk of primary failure). In Europe and Australia/New Zealand, the willingness to participate in a trial that included all patients was lower (28 % in Europe; 25 % in Australia/New Zealand), as was a trial that included patients at high risk of primary failure (38 % in Europe; 39 % in Australia/New Zealand). Nephrologists who have been in practice for a few years, saw a larger volume of patients, or self-identified as experts in vascular access literature were more likely to participate in a trial. LIMITATIONS: Survey distribution was limited to vascular access experts in participating European countries and ultimately led to a discrepancy in numbers of European to non-European respondents overall. Canadian views are likely over-represented in the overall outcomes. CONCLUSIONS: Our survey results suggest that nephrologists believe there is equipoise surrounding the optimal vascular access strategy and that a randomized controlled study should be undertaken, but restricted to those individuals with a high risk of primary fistula failure