Patient and clinician experiences of uncertainty in the diagnostic process: Current understanding and future directions

•Uncertainty occurs throughout the diagnostic process.•Both patients and clinicians experience uncertainty, albeit in different ways.•Educating patients about the diagnostic process and communicating any uncertainty throughout can help manage uncertainty. Uncertainty occurs throughout the diagnostic process and must be managed to facilitate accurate and timely diagnoses and treatments. Better characterization of uncertainty can inform strategies to manage it more effectively in clinical practice. We provide a comprehensive overview of current literature on diagnosis-related uncertainty describing (1) where patients and clinicians experience uncertainty within the diagnostic process, (2) how uncertainty affects the diagnostic process, (3) roots of uncertainty related to probability/risk, ambiguity, or complexity, and (4) strategies to manage uncertainty. Each diagnostic process step involves uncertainty, including patient engagement with the healthcare system; information gathering, interpretation, and integration; formulating working diagnoses; and communicating diagnoses to patients. General management strategies include acknowledging uncertainty, obtaining more contextual information from patients (e.g., gathering occupations and family histories), creating diagnostic safety nets (e.g., informing patients what red flags to look for), engaging in worst case/best case scenario planning, and communicating diagnostic uncertainty to patients, families, and colleagues. Potential strategies tailored to various aspects of diagnostic uncertainty are also outlined. Scientific knowledge on diagnostic uncertainty, while previously elusive, is now becoming more clearly defined. Next steps include research to evaluate relationships between management and communication of diagnostic uncertainty and improved patient outcomes.