Development of an online patient decision aid for kidney failure treatment modality decisions

Abstract

Background Patient decision aids (PtDAs) support patients and clinicians in shared decision-making (SDM). Real-world outcome information may improve patients’ risk perception, and help patients make decisions congruent with their expectations and values. Our aim was to develop an online PtDA to support kidney failure treatment modality decision-making, that: 1) provides patients with real-world outcome information, and 2) facilitates SDM in clinical practice. Methods The International Patient Decision Aids Standards (IPDAS) development process model was complemented with a user-centred and convergent mixed-methods approach. Rapid prototyping was used to develop the PtDA with a multidisciplinary steering group in an iterative process of co-creation. The results of an exploratory evidence review and a needs-assessment among patients, caregivers, and clinicians were used to develop the PtDA. Seven Dutch teaching hospitals and two national Dutch outcome registries provided real-world data on selected outcomes for all kidney failure treatment modalities. Alpha and beta testing were performed to assess the prototype and finalise development. An implementation strategy was developed to guide implementation of the PtDA in clinical practice. Results The ‘Kidney Failure Decision Aid’ consists of three components designed to help patients and clinicians engage in SDM: 1) a paper hand-out sheet, 2) an interactive website, and 3) a personal summary sheet. A ‘patients-like-me’ infographic was developed to visualise survival probabilities for each treatment modality on the website. Other treatment outcomes were incorporated as event rates (e.g. hospitalisation rates) or explained in text (e.g. the flexibility of each treatment modality). No major revisions were needed after alpha and beta testing. During beta testing, some patients ignored the survival probabilities because they considered these too confronting. Nonetheless, patients agreed that every patient has the right to choose whether they want to view this information. Patients and clinicians believed that the PtDA would help patients make informed decisions, and that it would support values- and preferences-based decision-making. Implementation of the PtDA has started in October 2020. Conclusions The ‘Kidney Failure Decision Aid’ was designed to facilitate SDM in clinical practice and contains real-world outcome information on all kidney failure treatment modalities. It is currently being investigated for its effects on SDM in a clinical trial.

Clinical Decision Support Tools in the Electronic Medical Record

“… 45 , 46 , 47 Because of the simplicity of the KFRE and accessibility of the variables included in the KFRE, it has previously been implemented into EMR systems to support both clinical practice and research on CDS tool integration. 38 , 45 , 46 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 Via its integration with EMR systems, KFRE can be automatically calculated, improving the identification of patients at risk of developing kidney failure and improving provider workflow. 45 , 46 , 47 , 49 , 52 , 53 , 55 , 57 , 60 , 61 Others 45 , 47 have suggested that incorporating automatic prompts into a KFRE CDS tool to encourage providers to order urinary albumin-to-creatinine ratio testing, which is not routinely collected, would improve the accuracy of KFRE and downstream patient outcomes.…”

Decision aids to assist patients and professionals in choosing the right treatment for kidney failure

“…the ‘Multiple Stakeholder Reasoning—Shared Understanding’ approach [ 113–117 , 126–129 ]. The evidence from those evaluated indicates that integrating PtDAs within kidney pathways supports PwKF to make informed, value-based treatment decisions about dialysis and shared decisions with their family and kidney practitioners [ 2 , 74 , 137–144 , 149 , 151 , 152 , 154–157 ].…”