The Quality and Accuracy of Hemophilia Information on the Internet.
Bibliographic record
Abstract
Abstract Abstract 244 The Internet has become a major source of health information for our patients, especially those with chronic illnesses. Hemophilia is an inherited bleeding disorder that is due to a deficiency of coagulation factor VIII (hemophilia A) or Factor IX (hemophilia B). There are many websites devoted to hemophilia, but currently there are no data on the quality of the information provided on the Internet. To assess the quality, accuracy and readability of information related to hemophilia that is available on the Internet, three reviewers (two physicians and one lay person with severe hemophilia A) reviewed the first three pages of hits for the search term “hemophilia” on the four most popular Internet search engines. The validated DISCERN rating instrument for written patient information was applied to assess the general quality of the information (Charnock et al. 1999). Content was assessed for breadth and accuracy using an adapted Checklist Rating System Instrument (Bichakjian et al. 2002). The World Federation of Hemophilia's “Guidelines for the Management of Hemophilia” were referenced as the gold standard of hemophilia information. Readability was assessed using the Flesch Reading Score and the Flesch-Kinkaid Grade level score. After omission of duplicates and inaccessible sites, a total of 31 websites were reviewed. The sites were 42% commercial, 29% institutional and 29% charitable. Reviewers showed good inter-rater reliability when assessing overall quality with the DISCERN tool, with a quadratic weighted kappa >0.6. Four websites (13%) contained a total of 15 inaccuracies. Readability of the five most highly-rated websites suggests that content is written at the equivalent of a grade 10/11 level, much higher than the grade 8 level suggested for patient education materials. In conclusion, the 31 websites containing hemophilia-related information varied widely in the content and quality of information with 13% of sites citing inaccuracies. Hemophilia treatment centers should be aware of the hemophilia resources available on the Internet and must guide patients in finding the most comprehensive and accurate information. Health care providers should be actively involved in the development of thorough and accurate web-based hemophilia education that is written at an appropriate level to meet the needs of our patients. Disclosures: Breakey: Baxter: Educational Grant for Hemophilia Patient Education. Blanchette:Baxter Healthcare Corporation: Educational Grant for Work in Hemophilia, Honoraria.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.174 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.009 | 0.005 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.000 |
| Insufficient payload (model declined to judge) | 0.002 | 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".