Investigating the Experiences and Educational Needs of Adolescents with Hemophilia Prior to Transition of Care: A Website Development Project.
Bibliographic record
Abstract
Abstract Abstract 1526 Background: Adolescents with hemophilia (AWH) have heightened educational needs as they become more independent and transition from pediatric to adult care. Poor compliance during adolescence may lead to suboptimal management and its long-term sequelae. An innovative website is being developed to meet these educational needs and foster the acquisition of self-management skills. Purpose: To examine the educational needs of AWH treated at The Hospital for Sick Children and explore how a web-based transition program can best support them. Methods: Qualitative, semi-structured interviews with a purposive sample of AWH addressed subjects’ experiences with hemophilia, views about transition, internet use, and thoughts about an educational website. The interviews were audio-recorded and transcribed verbatim. Themes were identified through constant comparative analysis by three independent reviewers. Results: Eleven of twelve subjects that were approached consented to be interviewed and data saturation was achieved in the areas of interest. Important themes surrounding the hemophilia experience included personal identity and perception of their condition, challenges, raising awareness, and sources of support. Some participants had concerns about transition to adult care but many also recognized its benefits. There was a broad spectrum of perceived preparedness for transition. All participants felt comfortable using the Internet and overall, felt a website would help them to learn about haemophilia and explain it to others. Social networking with others with haemophilia was deemed desirable by many. Conclusions: AWH are interested in a hemophilia website and have identified a variety of features which they believe may help to support them during transition of care and beyond. Disclosures: Breakey: Baxter Bioscience Canada: Fellowship salary provided through unrestricted educational grant.
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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 | 0.008 | 0.011 |
| Meta-epidemiology (narrow) | 0.000 | 0.001 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.003 |
| 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".