ABSTRACT
Background: Most patients are unaware of approaches to treating advanced chronic kidney disease (CKD) other than dialysis. Methods: We developed a dedicated decision aid on conservative kidney management using human-centered design principles in three phases: (1) discovery: engagement of informants to understand their needs and preferences; (2) design: multiple rapid cycles of ideation, prototyping, and testing of a decision aid with a small group of informants; and (3) implementation: testing the decision aid in real-world settings with attention to how the decision aid can be further refined. Informants included a national patient advisory committee on kidney diseases, 50 patients with stage 4 or 5 CKD and 35 of their family members, and 16 clinicians recruited from the greater Seattle area between June 2019 and September 2021. Results: Findings from the discovery phase informed an initial prototype of the decision aid, which included five sections: a description of kidney disease and its signs and symptoms, an overview of conservative kidney management and the kinds of supports provided, self-reflection exercises to elicit patients' values and goals, the pros and cons of conservative kidney management, and the option of changing one's mind about conservative kidney management. The prototype underwent several rounds of iteration during its design phase, which resulted in the addition of an introductory section describing the intended audience and more detailed information in other sections. Findings from its implementation phase led to the addition of examples of common questions that patients and family members had about conservative kidney management and a final section on other related educational resources. Conclusions: Human-centered design principles supported a systematic and collaborative approach between researchers, patients, family members, and clinicians for developing a decision aid on conservative kidney management.
