Empowering patients with sickle cell anemia and their families through innovative educational methods
Bibliographic record
Abstract
Sickle Cell Disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD is also known as Sickle Cell Anemia (SCA). There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self-efficacy regarding illness management of patients and parents/guardians. Patients (n=5; aged 8 – 18) with SCA and parents (n=5) of patients (aged 0 – 18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. Coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). Thematic analysis centred around SCA management concepts relevant to the research aims. Important themes that emerged included: ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’ and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials.
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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 | 0.010 | 0.011 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.006 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.007 | 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".