Unknowable uncertainty: towards communicating the limits of evidence in the care of multimorbidity

The National Institute of Nursing Research awarded the University of Utah $566,093 on September 2, 2026, under the Nursing Research program (CFDA 93.361) to develop and test methods for communicating clinical uncertainty in shared decision-making for children with medical complexity.

The project addresses a gap in how healthcare providers and families discuss treatment risks and benefits when evidence is limited or ambiguous—a common challenge in pediatric care of medically complex children. The recipient will conduct three aims over the five-year performance period through June 30, 2031. Aim 1 examines whether visual displays combined with text-based descriptions of uncertainty reduce knowledge gaps in understanding ambiguity and complexity. Aim 2 refines an existing uncertainty communication toolkit using human-centered design to align with the needs and language preferences of English- and Spanish-speaking populations. Aim 3 assesses the efficacy of the toolkit compared to usual care in improving shared decision-making in a test case of children with neuromuscular scoliosis. Work is performed in Emigration Canyon, Utah. This is a Project Grant, the standard research grant mechanism under the Nursing Research program supporting investigator-initiated clinical and non-clinical research.

Abstract

Effectively communicating the uncertainty around estimates of treatment risks and benefits (i.e., ambiguity and complexity) is a critical and unique component of shared decision making (SDM) for children with medical complexity. For children with medical complexity, much imprecision remains around estimates of treatment risks and benefits due to difficulties performing randomized controlled trials in a medically fragile and heterogenous population. When faced with uncertain outcomes, families often choose high-intensity interventions at the cost of quality of life when lower intensity options are also reasonable. Instead, in these situations of clinical equipoise, SDM should be used to help families and providers effectively talk about decision-related uncertainty. How to do so remains largely unknown. Our long-term goal is to transform clinical communication of ambiguity and complexity to enable higher quality SDM in english- and spanish-speaking populations, the two most common languages in the united states. To do so this proposal innovates on methods to communicate ambiguity and complexity and tests the efficacy of those methods in the care of children with medical complexity. In aim 1, we will examine whether visual displays when combined with text- based descriptions of uncertainty reduce knowledge gaps in understanding ambiguity and complexity types of uncertainty. In aim 2, we will refine an existing uncertainty communication toolkit using human-centered design to be contextually aligned with needs and experiences by language preference. In aim 3, we will assess the efficacy of the uncertainty communication toolkit compared to usual care in improving SDM in a test case of children with neuromuscular scoliosis. This proposal bridges a GAP in uncertainty communication that critically hinders SDM by developing and optimizing strategies to effectively convey ambiguity and complexity of treatment risks. This research can transform clinical communication practices to improve SDM and outcomes for children with medical complexity. By addressing the core issues of ambiguity and complexity in uncertainty communication, the proposal will provide a robust framework to improve SDM for growing populations of adults and children with multiple comorbidities facing similar gaps in evidence-based practice that result in immense uncertainties during high- stakes decision-making. This work will serve as a foundation for how to improve patient-caregiver-provider communication about decision-related uncertainties to facilitate ethical, informed decision making.