Shared decision-making in advanced kidney disease: a scoping review

Engels, Noel; Graav, Gretchen N. de; Nat, Paul van der; Dorpel, Marinus van den; Stiggelbout, Anne M.; Bos, Willem Jan W

doi:10.1136/bmjopen-2021-055248

Cited by 9 publications

(13 citation statements)

References 150 publications

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“…Although several studies have demonstrated the beneficial effects of PDAs (Stacey et al, 2017;Winterbottom et al, 2016), barriers to the integration of PDAs (Scalia et al, 2019). Indeed, a lack of PDA implementation has also been described by Engels et al (2022). Our study showed that 1 year after the publication of the Dutch tools, only 28% of the HCPs reported that patients used the Three Good Questions, while 31%-33% of HCPs used the 'Overviews of options', and only 51% used the Kidney Guide.…”

Section: Discussionmentioning

confidence: 62%

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Value of patient decision aids for shared decision‐making in kidney failure

Sluijs

Vonk

Bonenkamp

et al. 2023

Journal of Renal Care

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BackgroundIt is unknown how often Dutch patient decision aids are used during kidney failure treatment modality education and what their impact is on shared decision‐making.ObjectivesWe determined the use of Three Good Questions, ‘Overviews of options’, and Dutch Kidney Guide by kidney healthcare professionals. Also, we determined patient‐experienced shared decision‐making. Finally, we determined whether the experience of shared decision‐making among patients changed after a training workshop for healthcare professionals.DesignQuality improvement study.ParticipantsHealthcare professionals answered questionnaires regarding education/patient decision aids. Patients with estimated glomerular filtration rate <20 mL/min/1.73 m2 completed shared decision‐making questionnaires. Data were analysed with one‐way analysis of variance and linear regression.ResultsOf 117 healthcare professionals, 56% applied shared decision‐making by discussing Three Good Questions (28%), ‘Overviews of options’ (31%–33%) and Kidney Guide (51%). Of 182 patients, 61%–85% was satisfied with their education. Of worst scoring hospitals regarding shared decision‐making, only 50% used ‘Overviews of options’/Kidney Guide. Of best scoring hospitals 100% used them, needed less conversations (p = 0.05), provided information about all treatment options and more often provided information at home. After the workshop, patients' shared decision‐making scores remained unchanged.ConclusionsThe use of specifically developed patient decision aids during kidney failure treatment modality education is limited. Hospitals that did use them had higher shared decision‐making scores. However, the degree of shared decision‐making experienced by patients remained unchanged after healthcare professionals were trained on shared decision‐making and the implementation of patient decision aids.

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Section: Discussionmentioning

confidence: 62%

“…However, many PDAs have been developed for patients with CKD. In 2020, Winterbottom et al conducted a review on PDAs specifically for patients with CKD, focusing on the choice between dialysis and conservative care (Winterbottom et al, 2020) (Engels et al, 2022).…”

Section: Literature Reviewmentioning

confidence: 99%

Value of patient decision aids for shared decision‐making in kidney failure

Sluijs

Vonk

Bonenkamp

et al. 2023

Journal of Renal Care

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“…(Healthwise, 2022). A recent review of PtDAs in kidney disease and Google search did not identify any focusing on EoLC for people with kidney failure (Engels et al, 2022).…”

Section: Literature Reviewmentioning

confidence: 99%

Decision coaching for people with kidney failure: A case study

Buur

Bekker

Mathiesen

et al. 2023

Journal of Renal Care

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BackgroundLittle is known about the usefulness of decision coaching for people with kidney failure facing decisions about end‐of‐life care.ObjectivesTo investigate experiences of people with kidney failure who received decision coaching for end‐of‐life care decisions.DesignWe conducted a prospective case study bound by time (September to December 2021), location (one nephrology department), and guided by the Ottawa Decision Support Framework.ParticipantsAdults with kidney failure facing end‐of‐life care decisions.MeasurementsA nurse trained in decision coaching screened for unmet decisional needs with the SURE test and provided decision coaching using the Ottawa Personal Decision Guide. Postcoaching, the participants were rescreened using the SURE test and interviewed to explore their experience with decision coaching. Change in SURE test findings was analysed descriptively and systematic text condensation was used for the analysis of interviews. Recorded decision coaching sessions underwent content analysis using the Decision Support Analysis Tool.ResultsDecision coaching was provided to four adults with kidney failure. Median pre‐SURE test score was 2.5 (range 2–4) and posttest score was 3 (range 3–4), indicating a decrease in decisional needs. Participants described that decision coaching provided an overview of features of options to consider, identified remaining decisional needs for further discussion with relatives and health professionals and clarified next steps. Median Decision Support Analysis Tool score was 9 (range 8–9).ConclusionsAfter decision coaching, results suggest that the participants experienced fewer decisional needs and seemed clearer about the next steps in the decision making process.

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“…Some of these models, such as the Kidney Failure Risk Equation (KFRE), have been extensively validated and offer good predictive performance [ 9 – 11 , 37 – 41 ]. Even though well-validated models are readily available and guidelines recommend that nephrologists use CPMs, the actual use of CPMs in CKD practice seems limited [ 6 , 42 – 44 ]. This may be related to the CPMs themselves (e.g., limitations in predictive performance or user friendliness), and/or to the intended users (e.g., doubts about the reliability and generalizability of CPMs) [ 43 , 44 ].…”

Section: Introductionmentioning

confidence: 99%

“…This may be related to the CPMs themselves (e.g., limitations in predictive performance or user friendliness), and/or to the intended users (e.g., doubts about the reliability and generalizability of CPMs) [ 43 , 44 ]. CPMs are also often developed without the input of end-users (i.e., patients and nephrologists), and as a consequence, lack clinical relevance [ 42 , 43 ]. In addition, patients and nephrologists often prioritize different (treatment) outcomes [ 45 , 46 ] and may have different needs and preferences regarding the use and purpose of CPMs in CKD practice.…”

Section: Introductionmentioning

confidence: 99%

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

et al. 2023

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Introduction Guidelines on chronic kidney disease (CKD) recommend that nephrologists use clinical prediction models (CPMs). However, the actual use of CPMs seems limited in clinical practice. We conducted a national survey study to evaluate: 1) to what extent CPMs are used in Dutch CKD practice, 2) patients’ and nephrologists’ needs and preferences regarding predictions in CKD, and 3) determinants that may affect the adoption of CPMs in clinical practice. Methods We conducted semi-structured interviews with CKD patients to inform the development of two online surveys; one for CKD patients and one for nephrologists. Survey participants were recruited through the Dutch Kidney Patient Association and the Dutch Federation of Nephrology. Results A total of 126 patients and 50 nephrologists responded to the surveys. Most patients (89%) reported they had discussed predictions with their nephrologists. They most frequently discussed predictions regarded CKD progression: when they were expected to need kidney replacement therapy (KRT) (n = 81), and how rapidly their kidney function was expected to decline (n = 68). Half of the nephrologists (52%) reported to use CPMs in clinical practice, in particular CPMs predicting the risk of cardiovascular disease. Almost all nephrologists (98%) reported discussing expected CKD trajectories with their patients; even those that did not use CPMs (42%). The majority of patients (61%) and nephrologists (84%) chose a CPM predicting when patients would need KRT in the future as the most important prediction. However, a small portion of patients indicated they did not want to be informed on predictions regarding CKD progression at all (10–15%). Nephrologists not using CPMs (42%) reported they did not know CPMs they could use or felt that they had insufficient knowledge regarding CPMs. According to the nephrologists, the most important determinants for the adoption of CPMs in clinical practice were: 1) understandability for patients, 2) integration as standard of care, 3) the clinical relevance. Conclusion Even though the majority of patients in Dutch CKD practice reported discussing predictions with their nephrologists, CPMs are infrequently used for this purpose. Both patients and nephrologists considered a CPM predicting CKD progression most important to discuss. Increasing awareness about existing CPMs that predict CKD progression may result in increased adoption in clinical practice. When using CPMs regarding CKD progression, nephrologists should ask whether patients want to hear predictions beforehand, since individual patients’ preferences vary.

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Shared decision-making in advanced kidney disease: a scoping review

Cited by 9 publications

References 150 publications

Value of patient decision aids for shared decision‐making in kidney failure

Value of patient decision aids for shared decision‐making in kidney failure

Decision coaching for people with kidney failure: A case study

Predicting outcomes in chronic kidney disease: needs and preferences of patients and nephrologists

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