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Background Dialysis modalities and their various treatment schedules result from complex compromises ('trade-offs') between medical, financial, technological, ergonomic, and ecological factors. This study targets summarizing the mutual influence of these trade-offs on (trans)portable, wearable, or even (partially) implantable haemodialysis (HD) systems, identify what systems are in development, and how they might improve quality of life (QoL) for patients with kidney failure. Methods HD as defined by international standard IEC 60601–2-16 was applied on a PUBMED database query regarding (trans)portable, wearable, and (partly) implantable HD systems. Out of 159 search results, 24 were included and scanned for specific HD devices and/or HD systems in development. Additional information about weight, size, and development status was collected by the internet and/or contacting manufacturers. International airplane hand baggage criteria formed the boundary between transportable and portable. Technology readiness levels (TRLs) were assigned by combining TRL scales from the European Union and NATO medical staff. Results The query revealed 13 devices/projects: seven transportable (six TRL9, one TRL5); two portable (one TRL6–7, one TRL4); two wearable (one TRL6, one frozen); and two partly implantable (one TRL4–5, one TRL2–3). Discussion Three main categories of technical approaches were distinguished: single-pass, dialysate regenerating, and implantable HD filter with extracorporeal dialysate regeneration (in climbing order of mobility). Conclusions Kidneys facilitate mobility by excreting strongly concentrated waste solutes with minimal water loss. Mimicking this kidney function can increase HD system mobility. Dialysate-regenerating HD systems are enablers for portability/wearability and, combined with durable implantable HD filters (once available), they may enable HD without needles or intravascular catheters. However, lack of funding severely hampers progress. [ABSTRACT FROM AUTHOR]

Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end‐of‐life care. Design: A qualitative interview study. Methods: Individual semi‐structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end‐of‐life care. To meet these various needs, end‐of‐life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non‐systematic end‐of‐life care decision‐making processes limit patients' involvement. Patients and relatives need more knowledge about end‐of‐life care, and health professionals need more competences and time to discuss decisional needs. A shared decision‐making intervention for people with kidney failure when making end‐of‐life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

The inclusion of patient representatives as study consultants brings diverse perspectives, insights, and experiences to clinical trial design and execution, and their role in the clinical trial development process is being increasingly recognized and valued. The APPETIZE study evaluated the palatability of, and preference for, three potassium binders for treating hyperkalemia in patients with chronic kidney disease. A core aspect of the development of this study was the inclusion of a patient representative during the design stage. Here, I describe the process of patient involvement in the APPETIZE study design (ClinicalTrials.gov Identifier: NCT04566653), the resultant positive impacts, and key learnings. A patient with chronic kidney disease was invited to be a member of the APPETIZE trial design team. This patient representative attended study team meetings and provided invaluable input into protocol development, questionnaire selection, design of patient information sheets and consent forms, and primary manuscript structure. These critical insights resulted in an enhanced trial design and generation of high-quality, patient-relevant data. APPETIZE provides an excellent example of a patient preference study that relied on input from multiple stakeholder groups, including, most notably, the patients themselves. This approach may serve as a model for early and deep patient engagement in the design and interpretation of clinical trials. [ABSTRACT FROM AUTHOR]

Background: When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who do not identify as researchers. They are referred to as "knowledge users". This partnered approach is called integrated knowledge translation (IKT). We know little about knowledge users' involvement in the conduct of systematic reviews. We aimed to evaluate team members' degree of meaningful engagement and their perceptions of having used an IKT approach when updating the Cochrane Review of Patient Decision Aids. Methods: We conducted a pre-post mixed methods study. We surveyed all team members at two time points. Before systematic review conduct, all participating team members indicated their preferred level of involvement within each of the 12 steps of the systematic review process from "Screen titles/abstracts" to "Provide feedback on draft article". After, they reported on their degree of satisfaction with their achieved level of engagement across each step and the degree of meaningful engagement using the Patient Engagement In Research Scale (PEIRS-22) across 7 domains scored from 100 (extremely meaningful engagement) to 0 (no meaningful engagement). We solicited their experiences with the IKT approach using open-ended questions. We analyzed quantitative data descriptively and qualitative data using content analysis. We triangulated data at the level of study design and interpretation. Results: Of 21 team members, 20 completed the baseline survey (95.2% response rate) and 17/20 (85.0% response rate) the follow-up survey. There were 11 (55%) researchers, 3 (15%) patients/consumers, 5 (25%) clinician-researchers, and 1 (5%) graduate student. At baseline, preferred level of involvement in the 12 systematic review steps varied from n = 3 (15%) (search grey literature sources) to n = 20 (100%) (provide feedback on the systematic review article). At follow-up, 16 (94.1%) participants were totally or very satisfied with the extent to which they were involved in these steps. All (17, 100%) agreed that the process was co-production. Total PEIRS-22 scores revealed most participants reported extremely (13, 76.4%) or very (2, 11.8%) meaningful degree of engagement. Triangulated data revealed that participants indicated benefit to having been engaged in an authentic research process that incorporated diverse perspectives, resulting in better and more relevant outputs. Reported challenges were about time, resources, and the logistics of collaborating with a large group. Conclusion: Following the use of an IKT approach during the conduct of a systematic review, team members reported high levels of meaningful engagement. These results contribute to our understanding of ways to co-produce systematic reviews. Plain English Summary: When people who can use or benefit from research findings are engaged as partners on study teams, the quality and impact of findings are better. These people can include patients/consumers and clinicians who do not identify as researchers. This partnered approach is called integrated knowledge translation (IKT). This approach is rarely used and there is little information about using it with systematic reviews. A systematic review is a type of study that provides the best available evidence on a given topic by combining data from all existing studies. The aim of this study was to find out how engaged our team members felt when partnering on our systematic review about patient decision aids. Twenty of 21 team members participated in the study, including 11 researchers, 3 patients/consumers, 5 clinician-researchers, and 1 graduate student. We asked our team members to complete a survey about their experience as part of our IKT research process at two time points: before starting the study and after the study was done. Most team members felt extremely or very engaged in the process. All team members felt like partners. They gave examples of how this was achieved. Advantages to using the IKT approach included knowledge sharing, inclusion of more diverse voices, a more authentic research process, better and more relevant results, and personal benefits (e.g. enjoyment from being involved). Disadvantages to using this approach was that it took more time and resources. Three team members said there were no disadvantages. It is possible for patients/consumers and clinicians to partner and feel engaged with research teams doing systematic reviews. Our findings may help researchers engage knowledge users as equal partners on study teams. [ABSTRACT FROM AUTHOR]

Background: Knowledge about best practices of patient involvement in research among patients with chronic kidney disease is sparse, with little information about barriers to and facilitators of this process. The purpose of this study is to evaluate the process and outcomes of patient involvement in a particular chronic kidney disease research project. Objectives: To describe how patients with chronic kidney disease were involved in the research; to explain what occurred when patients with chronic kidney disease were involved; to identify facilitators of and barriers to patient involvement in research. Participants: Two patients with chronic kidney disease who have both been involved in a previous research project. Measurements: A retrospective embedded case study of patient involvement in research with the shared decision‐making and dialysis choice project inspired by Yin (2012, Case Study Methods), using document analysis and semistructured individual interviews. Data were analysed with specific research questions in mind. Results: Two patients participated in four research meetings covering all substudies of a research project and all six phases of the research process. Eight facilitators and barriers were identified. Conclusions: Patients with chronic kidney disease were involved in all the six phases of the research process but were more highly involved in some phases than others. Important facilitators of patient involvement in chronic kidney disease research include working as a team, being a part of the process, and being prepared for the work. Important barriers to patient involvement include patient vulnerability and uremic symptoms, both of which must be taken into account. [ABSTRACT FROM AUTHOR]

Objectives: Traditional potassium (K + ) binders for treating hyperkalaemia are unpalatable and poorly tolerated. Newer K + binders are reportedly better tolerated; however, no published data describe their palatability, a determinant of long-term adherence. This study evaluated the palatability of and preference for three K + binders: sodium and calcium polystyrene sulfonate (S/CPS), sodium zirconium cyclosilicate (SZC) and calcium patiromer sorbitex (patiromer)., Design: Phase 4, randomised, participant-blinded, cross-over study. Participants were randomised to one of six taste sequences and, using a 'sip and spit' approach, tasted each K + binder before completing a survey., Setting: 17 centres across the USA, Canada and European Union., Participants: 144 participants with chronic kidney disease, hyperkalaemia and no recent use of K + binders., Main Outcome Measures: For the primary (USA) and key secondary (Canada and European Union) endpoints, participants rated palatability attributes (taste, texture, smell and mouthfeel) and willingness to take each K + binder on a scale of 0-10 (rational evaluation). Feelings about each attribute, and the idea of taking the product once daily, were evaluated using a non-verbal, visual measure of emotional response. Finally, participants ranked the K + binders according to palatability., Results: In each region, SZC and patiromer outperformed S/CPS on overall palatability (a composite of taste, texture, smell and mouthfeel), based on rational evaluation and emotional response. Taking the product once daily was more appealing for SZC and patiromer, creating greater receptivity than the idea of taking S/CPS. The emotional response to mouthfeel had the strongest influence on feelings about taking each product. In each region, a numerically greater proportion of participants ranked SZC as the most preferred K + binder versus patiromer or S/CPS., Conclusions: Preference for more palatable K + binders such as SZC and patiromer may provide an opportunity to improve adherence to long-term treatment of hyperkalaemia., Trial Registration Number: NCT04566653., Competing Interests: Competing interests: DCW reports an ongoing consultancy contract with AstraZeneca and honoraria/speaker fees from Astellas, Bayer, Boehringer Ingelheim, George Clinical, GSK, Gilead, Janssen, Merck Sharp and Dohme, ProKidney, Tricida, Vifor and Zydus. HS has nothing to disclose. KH, JH, AA, H-LC, MN, GS, EW and JK are employees of and may hold stock in AstraZeneca. JM and CG are employees of AdSAM., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)