FP250FACIT-FATIGUE SCORES IN ADULT PATIENTS AT ENROLLMENT INTO THE GLOBAL AHUS REGISTRY
Bibliographic record
Abstract
INTRODUCTION AND AIMS: The scientific literature is limited in terms of defining fatigue levels observed in patients with atypical hemolytic uremic syndrome (aHUS). This analysis sought to evaluate fatigue in patients with aHUS at time of enrollment into the Global aHUS Registry. METHODS: The observational, noninterventional, multicenter Global aHUS Registry (NCT01522183), initiated in April 2012, is designed to collect demographic characteristics, medical and disease history, and treatment and outcomes data for patients with aHUS. This was an analysis at time of Registry enrollment. Registry enrollment is not linked to any other clinical condition and is consequently a snapshot of characteristics of patients with aHUS in the Registry at a given time point. Fatigue was assessed using the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale, in which higher scores indicate better quality of life. The analysis included all patients ≥18 years (y) of age with evaluable data regarding enrollment, date of birth, and FACIT-Fatigue score as of May 5, 2017. Patients were stratified into subgroups based on demographic characteristics, thrombotic microangiopathy (TMA) history, dialysis/transplant requirement, hospitalization, and use of eculizumab and plasma exchange/plasma infusion (PE/PI). RESULTS: The Registry enrolled 1549 patients; 621 adult patients had evaluable data for FACIT-Fatigue and were included. Sixty-three percent (n=391) were female and the mean (standard deviation [SD]) age was 42.9 (16.6) y. Ongoing TMA was present in 295 patients (48%) and 159 (26%) were on dialysis at enrollment. Hospitalization within 6 months of enrollment occurred in 165 patients (27%). PE/PI was used in 154 patients (25%) within 6 months. Eculizumab treatment was ongoing in 51 patients (8%) and 241 (39%) had recent treatment. Mean (SD) FACIT-Fatigue score was 34.7 (12.4). Subgroups with the largest differences in mean score were patients on dialysis (25.8, acute; 35.9, none), with recent hospitalization (30.1, yes; 36.7, no), PE/PI use (31.1, yes; 35.8, no), and TMA signs/symptoms (32.5, ongoing; 38.1, resolved since >6 months). CONCLUSIONS: These findings provide a clinical snapshot of patients with aHUS in a real-world setting. Dialysis requirement, recent hospitalization, use of PE/PI, and TMA status had the largest detrimental impact on FACIT-Fatigue scores in adult patients in the aHUS Registry. Future analyses will assess changes in FACIT-Fatigue scores over time with ongoing Registry follow-up.
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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 | 0.002 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
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".