How Do We Classify “Incomplete Lupus?”

Daikh, David I.; Costenbader, Karen H.

doi:10.1002/acr.23196

Cited by 4 publications

(3 citation statements)

References 8 publications

(11 reference statements)

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“…Probable, incomplete, or latent lupus has been a diagnostic construct applied to patients who do not fulfill ACR classification criteria for SLE . Cohort studies have shown that in up to 20% of patients, probable SLE may progress to SLE that fulfills ACR classification criteria over a period of 2–5 years, and some may develop organ damage .…”

Section: Discussionmentioning

confidence: 99%

Complement Activation in Patients With Probable Systemic Lupus Erythematosus and Ability to Predict Progression to American College of Rheumatology–Classified Systemic Lupus Erythematosus

Ramsey‐Goldman

Alexander²,

Massarotti

et al. 2019

Arthritis & Rheumatology

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Objective To evaluate the frequency of cell‐bound complement activation products (CB‐CAPs) as a marker of complement activation in patients with suspected systemic lupus erythematosus (SLE) and the usefulness of this biomarker as a predictor of the evolution of probable SLE into SLE as classified by the American College of Rheumatology (ACR) criteria. Methods Patients in whom SLE was suspected by lupus experts and who fulfilled 3 ACR classification criteria for SLE (probable SLE) were enrolled, along with patients with established SLE as classified by both the ACR and the Systemic Lupus International Collaborating Clinics (SLICC) criteria, patients with primary Sjögren's syndrome (SS), and patients with other rheumatic diseases. Individual CB‐CAPs were measured by flow cytometry, and positivity rates were compared to those of commonly assessed biomarkers, including serum complement proteins (C3 and C4) and autoantibodies. The frequency of a positive multianalyte assay panel (MAP), which includes CB‐CAPs, was also evaluated. Probable SLE cases were followed up prospectively. Results The 92 patients with probable SLE were diagnosed more recently than the 53 patients with established SLE, and their use of antirheumatic medications was lower. At the enrollment visit, more patients with probable SLE were positive for CB‐CAPs (28%) or MAP (40%) than had low complement levels (9%) (P = 0.0001 for each). In probable SLE, MAP scores of >0.8 at enrollment predicted fulfillment of a fourth ACR criterion within 18 months (hazard ratio 3.11, P < 0.01). Conclusion Complement activation occurs in some patients with probable SLE and can be detected with higher frequency by evaluating CB‐CAPs and MAP than by assessing traditional serum complement protein levels. A MAP score above 0.8 predicts transition to classifiable SLE according to ACR criteria.

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Section: Discussionmentioning

confidence: 99%

Complement Activation in Patients With Probable Systemic Lupus Erythematosus and Ability to Predict Progression to American College of Rheumatology–Classified Systemic Lupus Erythematosus

Ramsey‐Goldman

Alexander²,

Massarotti

et al. 2019

Arthritis & Rheumatology

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“…In practice, conversation, and communication-but not in medical records-physicians discuss "pre-diagnosis"; they use biological definitions to access tests, seek "precision medicine" explanations, use medications "off label," and recruit for basic science studies (19,20). No overview committee decides who writes the rules and for what purposes individual stakeholders apply them.…”

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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“…A strength of this model is that it assigns different, targetable biological mechanisms to each diagnosis. Another strength is that a diagnosis, once made, does not change 37–40. Weaknesses of this model are that, in clinical practice, ambiguous diagnoses occur often, blurring the separating lines, and that diagnoses do sometimes change.…”

Section: Illness Modelsmentioning

confidence: 99%