A SURVEY OF PATIENTS WITH SLE SUGGESTS LIMITED KNOWLEDGE OF NEPHRITIS UNLESS THERE IS ALREADY CHRONIC KIDNEY DISEASE
Bibliographic record
Abstract
PV127 / #823 Poster Topic: AS15 - Lupus Nephritis-Clinical Background/Purpose Approximately 60% of patients with Systemic Lupus Erythematosus (SLE) will develop Lupus Nephritis (LN) during the course of their disease.[1] However, patients may have limited knowledge about LN, which could hinder participation in shared decision making and lead to poor outcomes. This study examines the association between patients’ self-reported knowledge of LN and factors that might influence their understanding of the disease. Methods Cross-sectional data was collected from an online survey of patients with SLE (48 women, 2 men) in the Piedmont Healthcare Rheumatic Disease cohort. Patients were aged 21 to 74, race included African 81.6%, Mixed (other) 12.2%, Asian 2%, and European 1%. Qualtrics ® XM statistical software was used for analysis. Results Patient report of advanced general knowledge about LN was associated with having had a diagnosis of LN, chronic kidney disease (CKD), familiarity with the symptoms of LN, participation in LN support groups, and time spent researching LN online. The following had no impact: frequency of specialist visits, frequency of laboratory evaluations, or participation in LN education programs. The strongest indicators were CKD or participation in an LN support group (100% had knowledge of LN). Of those who did not report CKD, 100% had limited knowledge of LN. 100% of those who spent at least 6 hours searching for LN information on the internet reported advanced knowledge. [See Table 1]. Table 1: Chi-Squared analysis results Conclusions SLE patients without a diagnosis of LN often have limited knowledge of the disease, raising concerns about their recognition of early symptoms and efficient access to definitive care. Many patients may not have optimal knowledge about their condition until they develop chronic kidney disease. These data point to possible solutions stressing that the internet plays a large role in patient education, and it will be important to ensure that accurate information is available there. References: [1.] Saxena R. Arthritis Res Ther 2011;13:1-12.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.009 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".