Benchmarking the management of children with haemophilia in <scp>A</scp>ustralia
Bibliographic record
Abstract
Benchmarking can be used to identify best practice and establish a standard of performance1 and may be used in the health-care setting to optimise resource allocation while maximising clinical outcomes. Haemophilia A and haemophilia B are caused by congenital deficiency of factor VIII and factor IX, respectively, and may lead to recurrent, spontaneous bleeding into the muscles and joints.2 Management is available in the form of prophylactic infusions of clotting factor concentrates which prevent bleeding episodes and greatly improve the quality of life of these patients. Management of patients with haemophilia is complex and expensive with the majority of the cost directed towards funding clotting factor concentrate. Clinical management of haemophilia is co-ordinated by 16 haemophilia treatment centres (HTCs) based in metropolitan centres around Australia. In an attempt to identify the standard of care of children with haemophilia in Australia, a benchmarking initiative involving site visits to paediatric HTCs around Australia was conducted. Available literature on standards of care for haemophilia from the United States, Canada, United Kingdom and Europe was reviewed, and a data collection tool was developed. A reviewer visited the eight paediatric HTC responsible for managing children with haemophilia in Australia. At the site visits, a semi-structured interview was conducted, and an estimate of the time HTC staff committed to managing patients with haemophilia was assessed (Fig. 1 ). Most centres were able to provide the majority of core services considered essential for paediatric haemophilia care3 with significant differences in personnel resources. Haemophilia treatment guidelines recommend that physiotherapy and social work should have dedicated roles in a comprehensive haemophilia care team. Physiotherapy is critical in rehabilitation from acute musculoskeletal bleeds and promoting joint health independent of bleeding episodes. Social worker input can provide both psychosocial support and facilitate patient/carer access to essential community services and develop psychological strategies to improve coping with a chronic illness. In the absence of core team care services, patients may be less equipped to appropriately manage bleeding episodes and may rely instead on additional, potentially unnecessary and expensive clotting factor infusions. Alternate strategies with the use of physical rehabilitation and appropriate use of anti-inflammatory medications are an additional adjuvant to joint bleeding and pain.4 Providing expert assessment of joint function and psychological well-being is critical to ensure the cost effectiveness of clotting factor concentrate in patients with haemophilia is optimised. Relative EFT for individual haemophilia treatment centres for each core team member. , medical director; , nurse specialist; , physiotherapist; , social worker; , data manager.
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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 | 0.023 | 0.029 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.003 | 0.006 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 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".