Diagnoses Without Names: Challenges for Medical Care, Research, and Policy

Doctors, patients, investigators, administrators, and policymakers who assign diagnoses assume three elements: the name describes an entity with conceptual or evidentiary boundaries, the person setting the name has a high degree of certainty, and the name has a consensus definition. This book challenges this practice and offers an alternative to assigning diagnoses: quantitating diagnostic uncertainty in personal and public medical plans.
This book offers the stakeholders' views participating in a workshop, sponsored by the Barbara Volcker Center/Hospital for Special Surgery, taking place in April 2020, about uncertain diagnoses. Chapters examine the circumstances in which diagnosis names are "unassignable", either because patients do not fit within diagnostic "boxes" or because health abnormalities evolve and change over time. In addition, the book deconstructs the processes of diagnosis and explores how different stakeholders used diagnosis names for various purposes. In examining pertinent questions, the book offers a roadmap to achieving consensus definitions or including measures of uncertainty in personal care, research, and policy.
Diagnoses Without Names: Challenges for Medical Care, Research, and Policy is an essential resource for physicians and related professionals, residents, fellows, and graduate students in internal medicine, rheumatology, and clinical immunology as well as investigators, administrators, policymakers.


Table of Contents:
​Part I - What is a diagnosis.- 1. Chasing My Cure: Lessons learned from my rare illness.- 2. A Pragmatic Approach to Diagnostic Categorization.- 3. How diagnoses are assigned.- 4. Toward Molecular Diagnoses for Autoimmune Rheumatic Diseases.- Part II - Purposes of diagnosis.- 5. Diagnostic Uncertainty in Drug Development.- 6. Confronting the Inevitability of Diagnostic Uncertainty Across Multiple Legal Domains.- 7. The FDA and the Drug Development Process.- Part III - Assigning diagnoses.- 8. Diagnosis of Systemic Lupus Erythematosus in the Age of Precision Medicine.- 9. The Impact of Antinuclear Antibody Testing on the Naming and Misnaming of Disease.- 10. In the Box or Out of the Box.- 11. Ever Evolving Disease Classification Criteria for Clinical Trials and Studies: The Case of Systemic Lupus Erythematosus.- 12. Prognosis: A framework for clinical practice when patients have ‘symptoms with no diagnosis’.- 13. When the Illness Has No Name: Focus on ClinicalTrials in Systemic Lupus Erythematosus.- 14. The Epidemiology of Systemic Lupus Erythematosus.- Part IV - Uncertainty.- 15. Managing and tolerating diagnostic uncertainty.- 16. Is there a textbook for non-textbook patients?.- 17. The Changing Role Of Uncertainty In Physician-Patient Relationships.- 18. Syndromes in Search of a Name: Disorders of Consciousness, Neuroethics & Nosological Humility.- 19. Reflections on the Conference by a Physician-Patient.- 20. Clinical Ambiguity in the Intelligent Machine Era (Treats Breaks and Discharges).- 21. Shame, Name, Give Up the Game? Three Approaches to Uncertainty.

About the Author :
Michael D. Lockshin, MD, MACRDirector, Barbara Volcker CenterHospital for Special SurgeryProfessor of Medicine and Obstetrics GynecologyWeill Cornell MedicineNew York, NY
Mary K. Crow, MDPhysician-in-ChiefChair, Department of MedicineBenjamin M. Rosen Chair in Immunology and Inflammation ResearchHospital for Special SurgeryChief, Division of RheumatologyJoseph P. Routh Professor of Rheumatic Diseases in MedicineWeill Cornell MedicineNew York, NY
Medha Barbhaiya, MD, MPHAssistant Attending PhysicianBarbara Volcker Center for Women and Rheumatic DiseaseHospital for Special SurgeryAssistant Professor of MedicineWeill Cornell MedicineNew York, NY