Research recommendations within each topic area are listed in order of priority, stratified by modality type.JE Flythe et al.: BP and volume control in dialysis: a KDIGO conference report

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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.

The objective of this scoping review is to investigate and map existing empirical evidence on patient involvement interventions helping patients with end-stage kidney disease to make end-of-life care decisions about kidney services. Introduction:Patients with end-stage kidney disease have a high disease burden and mortality rate. Despite this, kidney services differ in how they offer and integrate end-of-life care, if it is offered at all. Some countries have established advance care planning protocols to encourage patient involvement when offering end-of-life care options as part of end-stage kidney disease care. However, there is a limited understanding of the components of patient involvement interventions designed to support patients with end-stage kidney disease making decisions about end-of-life care. Inclusion criteria:The review will consider studies on patient involvement interventions concerning end-of-life care decisions for patients with end-stage kidney disease. A broad definition of patient involvement interventions will be used. Studies on interventions that do not involve patients or relatives will be excluded. The review will focus on interventions applied to kidney health care and other services, such as community-based health care.Methods: MEDLINE, Embase, Scopus, and CINAHL will be searched. The literature will be screened for inclusion by two independent reviewers. Data synthesis will be conducted through relational analysis investigating patient involvement interventions and relevant information in line with the review objective and questions. Data will be extracted and listed in the data extraction instruments, accompanied by a narrative summary describing how the results relate to the review objective.

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