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.
Background Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project. Methods This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects. Results The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods. Conclusion The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.
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