Development of digital decision aid among surrogate decision makers for critically ill patients requiring renal replacement therapy: a formative research study

Abstract

Introduction: Renal replacement therapy (RRT) is increasingly being adopted for critically ill patients suffering from acute kidney injury, followed by inevitably high rates of morbidity and mortality. Whether or not to choose RRT for critically ill patients is a significant concern of surrogate decision makers, which issues a serious decision dilemma. While few evidence supports for surrogates to make the best decision when their loved ones face the possibility of RRT in ICU. The aim of our study is to develop a decision aid through user-centered design to help surrogate decision making for critical illness requiring RRT. Methods: We conducted a user-centered design to develop the decision aid, with following four steps: (1) competitive analysis - to gain insights from the decision support tactics and development strategies of existing decision aids through a systematic environmental scan; (2) user needs assessment - to explore targeted user decisional needs by semi-structured interviews with surrogate decision makers; (3) user persona - to develop a typical user persona by users’ context immersion to inform subsequent development strategies; (4) evidence synthesis - synthesize latest clinical evidence on RRT decision making according to above requirements. Results: The rapid prototyping of the RRT decision aid brought four steps to achieve the best decision making, including identifying the treatment decisions, weighing the benefits and risks, clarifying values and preferences, and making the decision. We identified sixteen available decision aids related to RRT in the areas of end-of-life issues (N=2), end-stage renal disease (N=5), and chronic kidney disease (N=9). Available resources informed us of insights from the evidence-based necessity for development, the effective tool to collect primary sources, content presentation, and interactive features. We conducted semi-structured interviews with fifteen family surrogates to explore their decisional needs for their loved ones in an ICU setting. Four thematic domains of stuck into dilemmas, limited capacity, sense of uncertainty, and delayed confirmation were identified by qualitative descriptive analysis, which was further refined into targeted users’ potential needs of professional support, role guidance, information needs, and value clarification. The typical user persona “Booby”, a family surrogate decision maker for his elderly father diagnosed with septic AKI after ICU admission, was constructed to help understand users’ needs and inform design choices through context immersion. We searched a total of 15, 220 records from databases and websites between Dec 2019 and May 2020, and 27 studies were included to form the main content of the prototype. Evidence from eligible studies was extracted manually and classified as aspects of benefits and risks of RRT, possible outcomes, and reasons to choose, to provide comprehensive evidence-based decision support. Conclusions: We have rapidly prototyped a digital decision aid using a user-centered design targeted at family surrogate decision makers of critically ill patients requiring RRT in ICU. Future studies are warranted to evaluate the usability, feasibility, and comprehensibility of the decision aid through iterative refinement. Trial Registration: ChiCTR2000031613