Haemophilia home care: A qualitative evaluation study of the Be Involved infusion program
Bibliographic record
Abstract
INTRODUCTION: In Canada, patients with haemophilia can receive health care through a limited number of specialized haemophilia treatment centres. Treatment of this X-linked bleeding disorder through self-infusion of factor replacement is common; however, some individuals with haemophilia require additional infusion support from medical professionals. While provincially funded outreach clinics and telehealth are available, pharmaceutical companies that supply factor have developed novel home infusion programs wherein registered nurses assist/manage factor administration in the patients' homes. AIM: The current qualitative evaluation explored the real-world effectiveness and impact of the Be Involved (Pfizer Canada) home infusion service, from provider, program end-user and needs analysis perspectives. METHODS: Qualitative interviews with patients and caregivers who had used Be Involved (n = 7) and Be Involved Staff (n = 8) provided important insights and recommendations for program improvement initiatives. Also included were needs assessments of potential end-users (n = 11) as a means to making program adjustments. RESULTS: The inductively derived findings revealed Be Involved as a highly valued, though key specialized service providing significant assistance to a small number of haemophilia patients. Augmenting traditional services, the program was endorsed as easing the burden of haemophilia care, while the Be Involved nurses were affirmed as highly effective and critical to the program's success. A lack of program promotion and awareness was evident - limiting uptake, amid communication and systems delivery challenges. CONCLUSIONS: The current evaluation findings inform our recommendations for, and brief discussion of, the need for stronger promotional strategies and improved communication lines to increase the reach and efficiencies of the Be Involved program.
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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 | 0.030 | 0.035 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.010 | 0.008 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.003 |
| 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".