A framework to characterize the costs of delayed diagnoses

Background Delays in diagnosis are emotionally and financially impactful for patients and families, the healthcare system, and society, yet the true costs of delayed diagnoses have been inadequately characterized. We sought to establish a framework characterizing the costs of delayed diagnoses that could be used by diverse stakeholders. Methods We used a three-phase process: 1) a preparatory phase deploying an expert advisory group to establish conditions of interest; 2) a qualitative information gathering phase to ensure multiple perspectives informed the initial framework; and 3) a refinement phase to integrate stakeholder input and test the framework against clinical scenarios. Results Our multi-level framework delineates five domains of costs attributable to delayed diagnoses: direct, indirect, opportunity, long-term disability, and intangible costs. Challenges in cost measurement include: varying costs across insurance type and healthcare systems; determination of whether and how long a diagnosis is delayed; a paucity of usable data sources; and considerations that affect cost and cost interpretation on a case-by-case basis, including conditions that resolve without diagnosis or treatment. Intangible costs are important to patients but pose challenges for measurement. Discussion Our framework allows users to identify, organize, and estimate the total costs of delayed diagnoses through a comprehensive accounting of costs that are often overlooked in analyses of diagnostic delays. It allows for estimations of costs depending on the user’s goals and data availability, reinforcing its flexibility across users and uses. Future work is needed to develop usable data sources to characterize costs attributable to diagnostic delays.