Development of a Mortality Risk Prediction Tool for People With Kidney Failure: A Nominal Group Technique Study of End-User Priorities

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RATIONALE & OBJECTIVE: Many mortality risk prediction models for individuals with kidney failure are available; however, their development did not involve end-users during the design process, and none are widely used in clinical practice. We identified the needs and preferences of end-users to inform the development and enhance the usability of a mortality risk prediction tool for people with kidney failure. STUDY DESIGN: A half-day, online consensus workshop was conducted using a modified nominal group technique. SETTING & PARTICIPANTS: People with lived experience of kidney failure (patients with or without receipt of kidney replacement therapy and their caregivers) or kidney failure management (health care providers and policymakers) recruited from across Canada. ANALYTICAL APPROACH: Preferences were elicited in 3 topic areas: the tool's intended use, timing (prediction horizon and update frequency), and relevant predictor variables. Conventional content analysis of discussion transcripts was conducted to elaborate on the findings. RESULTS: Eighteen individuals from across 5 provinces participated in the workshop, including 7 patients, 3 caregivers, and 8 health care providers or policymakers. Participants prioritized the following: (1) tool use within clinics and in consultation with nephrologists; (2) personalization of the prediction time horizons and reassessment of risk prediction following changes in clinical condition; and (3) inclusion of coexisting conditions, kidney failure characteristics (eg, unplanned dialysis start), and frailty status as key predictor variables. Analysis of transcripts identified several factors influencing the tool's usability, including provider trust, comfort in discussing mortality risk, patient privacy, availability of follow-up and support systems, patient readiness, and feasibility of incorporating desired predictor variables. LIMITATIONS: Media-based recruitment and participation barriers may have limited the representativeness of the patient sample. CONCLUSIONS: End-users of mortality prediction tools for people with kidney failure prioritized design and use considerations. Co-design of future tools to align with end-user preferences may enhance their usability and enhance their uptake. PLAIN-LANGUAGE SUMMARY: Many calculators predict survival for people with kidney failure on dialysis, but few are used in practice, in part because they were not created with input from people who need them. To learn what users want, we conducted an online consensus workshop involving individuals living with kidney failure, caregivers, clinicians, and policymakers from across Canada. The participants discussed how and when the tool should be used and on which factors the tool should be based. They prioritized the use of the tool during clinic visits, personalizing the prediction horizon, and taking into account health conditions and frailty. The participants emphasized the importance of trust, comfort in communication, and support systems when using the tool. Involving users in tool design may enhance its usability and adoption.

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