Patient involvement interventions for patients with kidney failure making end-of-life care decisions: a scoping review

Abstract

Objective: The objective of this review was to investigate and map empirical evidence of patient involvement interventions to support patients with kidney failure making end-of-life care decisions in kidney services. Introduction: Clinical guidance integrating end-of-life care within kidney failure management pathways varies. Advance care planning interventions aimed at involving patients with kidney failure in their end-of-life care planning are established in some countries. However, there is limited evidence of the other types of patient involvement interventions integrated within services to support patients with kidney failure in making decisions about their end-of-life care. Inclusion criteria: This scoping review included studies exploring patient involvement interventions evaluated for patients with kidney failure considering end-of-life care, their relatives, and/or health professionals in kidney services. Studies of children under the age of 18 years were excluded. Methods: The review was informed by JBI methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review guidelines. MEDLINE, Scopus, Embase, and CINAHL were searched for full-text studies in English, Danish, German, Norwegian, or Swedish. Two independent reviewers assessed the literature against the inclusion criteria. A relational analysis framework was used to synthesize the data extracted from the included studies, and to investigate and map different patient involvement interventions. Results: The search identified 1628 articles, of which 33 articles met the inclusion criteria. A total of 23 interventions were described. Interventions targeted patients (n=3); health professionals (n=8); patients and health professionals (n=5); and patients, relatives, and health professionals (n=7). Intervention components included patient resources (eg, information, patient decision aids), consultation resources (eg, advance care planning, shared decision-making), and practitioner resources (eg, communication training). Patient involvement interventions were delivered within hospital-based kidney services. Conclusions: The review identified several ways to support patients with kidney failure to be involved in end-of-life care decisions. Future interventions may benefit from adopting a complex intervention framework to engage multiple stakeholders in the research and design of an intervention for shared decision-making between patients with kidney failure, their relatives, and health professionals about integrating end-of-life care options into their kidney disease management pathway.

Shared decision making for patients with kidney failure to improve end‐of‐life care: Development of the DESIRE intervention

“…This study aimed to describe the development process of the DESIRE intervention. From investigating users' needs, goals, strengths, limitations, context and intuitive processes we had some idea about which components the intervention should contain (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023), (Karlsson et al, 2023) found several enablers and outcomes from involving relevant stakeholders that were similar to our findings. They found that the researchers' perspective was changed based on the experiences of the patients and relative partners, who had provided the researchers with new knowledge from their specific stakeholder perspectives (Karlsson et al, 2023).…”

“…These were part of the workshop considerations and discussions. In addition, key uncertainties that had been identified prior to the development process (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) were covered in the workshop discussions, for example, the duration of the SDM conversations and at what point in the illness trajectory a conversation should be offered to patients with kidney failure and their relatives.…”

“…This article describes the steps taken to develop an EoLC SDM intervention enabling patients with kidney failure, their relatives, and health professionals to make these difficult decisions together in a timely manner, and is part of a project to develop and evaluate an SDM intervention for use in Danish kidney services (Buur et al, 2022). Our previous research to identify current practice, and the needs of multiple stakeholders, in Denmark, when making shared decisions about EoLC as part of managing kidney failure include: (1) a scoping review investigating and mapping empirical evidence of patient involvement interventions to support patients with kidney failure making EoLC decisions in kidney services (Buur, Bekker, Madsen, et al, 2023); (2) a qualitative interview study investigating the decisional needs of people with kidney failure, their relatives, and health professionals in Denmark when planning EoLC (Buur et al, 2024); and (3) a case study investigating the experiences of people with kidney failure who received decision coaching for EoLC decisions (Buur, Bekker, Mathiesen, et al, 2023). The findings of each study were analysed individually.…”

“…To inform the development and refining of the DESIRE intervention, the data gathered from the research conducted to understand end users (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) were used during four multidisciplinary workshops hosted by the first author in September, October, November and December 2022.…”

“…Prior to each of the four workshops, the first author prepared a detailed script outlining the various workshop sessions. This included the aim of the workshop, presentations of data collected to support the development process (Buur et al, 2024;Buur, Bekker, Madsen, et al, 2023;Buur, Bekker, Mathiesen, et al, 2023) Suggestions from all participants served as data to inform the development of a prototype of the DESIRE intervention. Analysis of data began in the workshops through a consensus-based decision making process where the entire research group participated in ensuring that all participants had a say in the process.…”