Chasing My Cure: Lessons Learned from My Rare Illness

Fajgenbaum, David C

doi:10.1007/978-3-031-04935-4_1

Cited by 1 publication

(1 citation statement)

References 14 publications

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“…The biological purpose for diagnoses uses inclusive definitions. It accepts patients with uncertain diagnoses in studies of illness mechanisms in individuals and allows physicians to intervene, prognosticate, and communicate (12)(13)(14). The biological purpose stratifies patients according to environmental, socioeconomic, comorbidities, genetic, and phenotypic contributors to outcome (15)(16)(17)(18).…”

Section: What Are the Purposes For Which Diagnosis Names Are Used?mentioning

confidence: 99%

When a Diagnosis Has No Name: Uncertainty and Opportunity

Lockshin

Crow

Barbhaiya

2021

ACR Open Rheumatology

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Diagnostic uncertainty, commonly encountered in rheumatology and other fields of medicine, is an opportunity: Stakeholders who understand uncertainty's causes and quantitate its effects can reduce uncertainty and can use uncertainty to improve medical practice, science, and administration. To articulate, bring attention to, and offer recommendations for diagnostic uncertainty, the Barbara Volcker Center at the Hospital for Special Surgery sponsored, in April 2021, a virtual international workshop, "When a Diagnosis Has No Name." This paper summarizes the opinions of 72 stakeholders from the fields of medical research, industry, federal regulatory agencies, insurers, hospital management, medical philosophy, public media, health care law, clinical rheumatology, other specialty areas of medicine, and patients. Speakers addressed the effects of diagnostic uncertainty in their fields. The workshop addressed the following six questions: What is a diagnosis? What are the purposes of diagnoses? How do doctors assign diagnoses? What is uncertainty? What are its causes? How does understanding uncertainty offer opportunities to improve all fields of medicine? The workshop's conveners systematically reviewed video recordings of formal presentations, video recordings of open discussion periods, manuscripts, and slide files submitted by the speakers to develop consensus takehome messages, which were as follows: Diagnostic uncertainty causes harm when patients lack access to laboratory test and treatments, do not participate in research studies, are not counted in administrative and public health documents, and suffer humiliation in their interactions with others. Uncertainty offers opportunities, such as quantifying uncertainty, using statistical technologies and automated intelligence to stratify patient groups by level of uncertainty, using a common vocabulary, and considering the effects of time.

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