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When a Diagnosis Has No Name: Uncertainty and Opportunity
Michael D Lockshin1, Mary K Crow1, Medha Barbhaiya1
1Hospital for Special Surgery, Weill Cornell Medicine, New York, New York.
ACR Open Rheumatology
|November 22, 2021
Summary
Diagnostic uncertainty, common in rheumatology, presents opportunities when understood. Quantifying uncertainty and improving patient access to care can enhance medical practice and research.
Area of Science:
- Medical practice and research
- Rheumatology and diagnostic uncertainty
Background:
- Diagnostic uncertainty is prevalent across medical specialties, including rheumatology.
- A workshop convened stakeholders to explore the causes and impacts of diagnostic uncertainty.
- Stakeholders included patients, clinicians, researchers, and industry representatives.
Purpose of the Study:
- To articulate and address diagnostic uncertainty.
- To offer recommendations for managing diagnostic uncertainty.
- To explore how understanding uncertainty can improve medicine.
Main Methods:
- A virtual international workshop titled "When a Diagnosis Has No Name" was held.
- Opinions from 72 diverse stakeholders were summarized.
- Systematic review of presentations, discussions, and submitted materials was conducted.
Main Results:
- Diagnostic uncertainty can cause patient harm, including limited access to treatments and exclusion from research.
- Harm manifests as lack of access to laboratory tests, treatments, research participation, and administrative inclusion.
- Patients may experience humiliation and lack of recognition.
Conclusions:
- Understanding and quantifying diagnostic uncertainty offers opportunities for improvement.
- Leveraging statistical technologies and artificial intelligence can stratify patient groups by uncertainty levels.
- Establishing a common vocabulary and considering temporal effects are crucial for managing uncertainty.
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