The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. To provide further details about design and development methods, we summarized findings from a subgroup (n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes.

Background: Patients with stage 5 chronic kidney disease (CKD5) collaborate with their clinicians when choosing their future treatment modality. Most elderly patients with CKD5 may only have two treatment options: dialysis or conservative kidney management (CKM). The objective of this systematic review was to investigate whether CKM offers a quantity or quality of life benefit compared to dialysis for some patients with CKD5. Methods: The databases MEDLINE, EMBASE, the Cochrane Library, and CINAHL were systematically searched for studies comparing patients with CKD5 who had chosen or were treated with either CKM or dialysis. The primary outcomes were mortality and quality of life (QoL). Hospitalization, symptom burden, and place of death were secondary outcomes. For studies reporting hazard ratios, pooled values were calculated, and forest plots conducted. Results: Twenty-five primary studies, all observational, were identified. All studies reported an increased mortality in patients treated with CKM (pooled hazard ratio 0.47, 95 % confidence interval 0.34–0.65). For patients aged ≥ 80 years and for elderly individuals with comorbidities, results were ambiguous. In most studies, CKM seemed advantageous for QoL and secondary outcomes. Findings were limited by the heterogeneity of studies and biased outcomes favouring dialysis. Conclusions: In general, patients with CKD5 who have chosen or are on CKM live for a shorter time than patients who have chosen or are on dialysis. In patients aged ≥ 80 years old, and in elderly individuals with comorbidities, the survival benefits of dialysis seem to be lost. Regarding QoL, symptom burden, hospitalization, and place of death, CKM may have advantages. Higher quality studies are needed to guide patients and clinicians in the decision-making process.

Background: Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients’ knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. Method: A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively. Results: The participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p = 0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p = 0.006) but no significant difference on the readiness score (87% versus 84%; p = 0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p = 0.935). Interview data informed the interpretation of these results. Conclusions: Although there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results. Trial registration: The full trial protocol is available at ClinicalTrials. Gov (NCT03868800). The study has been registered retrospectively.

Objective To evaluate the ‘Shared Decision-making and Dialysis Choice’ (SDM-DC) intervention with regard to patients’ experience and involvement. Design Semistructured individual interviews and systematic text condensation for data analysis. Setting The SDM-DC intervention was implemented and evaluated at four different hospitals in Denmark. Participants A total of 348 patients had received the SDM-DC intervention, and of these 29 patients were interviewed. Interventions SDM-DC was designed for patients facing a choice of dialysis modality. The available modalities were haemodialysis and peritoneal dialysis, either performed by patients on their own or with help from a healthcare professional. The intervention was tailored to individual patients and consisted of three meetings with a dialysis coordinator who introduced a patient decision aid named ‘Dialysis Choice’ to the patient. Findings The following were the four main findings: the decision was experienced as being the patient’s own; the meetings contributed to the decision process; ‘Dialysis Choice’ contributed to the decision process; and the decision process was experienced as being iterative. Conclusions The patients experienced SDM-DC as involving them in their choice of dialysis modality. Due to the iterative properties of the decision-making process, a shared decision-making intervention for dialysis choice has to be adapted to the needs of individual patients. The active mechanisms of the meetings with the dialysis coordinator were (1) questions to and from the patient, and (2) the dialysis coordinator providing accurate information about the options. The overview of options and the value clarification tool in the decision aid were particularly helpful in establishing a decision-making process based on informed preferences.

Background: Kidney services vary in the way they involve people with kidney failure (PwKF) in treatment decisions as management needs change. We discuss how decision-science applications support proactively PwKF to make informed decisions between treatment options with kidney professionals.Methods: A conceptual review of findings about decision making and use of decision aids in kidney services, synthesized with reference to: the Making Informed Decisions—Individually and Together (MIND-IT) multiple stakeholder decision makers framework; and the Medical Research Council—Complex Intervention Development and Evaluation research framework.Results: This schema represents the different types of decision aids that support PwKF and professional reasoning as they manage kidney disease individually and together; adjustments at micro, meso and macro levels supports integration in practice.Conclusion: Innovating services to meet clinical guidelines on enhancing shared decision making processes means enabling all stakeholders to use decision aids to meet their goals within kidney pathways at individual, service and organizational levels.

Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient–professional shared decision-making between dialysis and conservative management treatment pathways. We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name ‘conservative management’. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.