P‐BB‐8 | A Survey to Understand C1 Esterase Inhibitor Distribution Patterns and Use in Canada
Bibliographic record
Abstract
Hereditary angioedema (HAE) is a rare, genetic condition treated with plasma-derived human C1 esterase inhibitor (C1-INH). Little is known about patient geographic distribution and patterns of use. The project aim was to understand how and where C1-INH product is being used to treat HAE in Canada. An online survey using REDCap was distributed by email to hospitals that had received C1-INH from the blood supplier between December 2019 and November 2020. Hospital demographics, contact information and C1-INH use in-hospital and by patients at home was requested. Descriptive analyses were performed. Calculation of IUs of C1-INH from vial numbers used by hospitals was assumed to follow the national distribution of vial sizes (1500 and 500 IUs). Research Ethics Board approval was not required. Respondents: 83/181 hospitals (47.5%) that received C1-INH responded: 39 from Ontario; 35 from Alberta and British Columbia combined and 9 from other provinces. The 83 hospitals represented 52.3% of the C1-INH product distributed nationally. Patients: 221 patients received 1844 vials (2.6 million IUs) of C1-INH in a hospital setting: 138 in the emergency department (62.4 %), 53 as inpatients (24.0%), and 30 in out-patient clinics (13.6%). The total number of hospital patient encounters was 615 with the out-patient clinic having the highest proportion (52.5%). For home care use, 68 hospitals (81.9%) issued product to 239 patients; 67.8% were female. The most common age category was 30–44 years but in Ontario the age demographic was slightly older (45–59 years). Distribution and use: The total number of C1-INH units issued to all hospitals in Canada was 62,260,000; of which 32,568,000 units were issued to the 83 responding hospitals. There were 2,616,000 IUs of C1-INH transfused in hospitals, 424,500 IUs transferred to other hospitals and 101,000 IU discarded. For home care, 31,395,000 IUs were transfused; hence, home care use accounted for 92% of product issued. This project gives a Canadian snapshot of the distribution and use of C1-INH both in hospitals, and at home for patients with HAE, with most patients residing in three provinces and the majority of product being used for home care. Further information is required to understand the proportion of home product used on-demand versus prophylactically.
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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 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.004 |
| Science and technology studies | 0.002 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.006 | 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".