A Systematic Evaluation of the Quality, Accuracy, and Reliability of Internet Websites about Pulmonary Arterial Hypertension
Bibliographic record
Abstract
Abstract Rationale Patients with pulmonary arterial hypertension (PAH) or their caregivers may seek information about their disease online, but the accuracy and quality of websites on PAH is not known. Objectives To assess the quality, reliability, and accuracy of information on websites about PAH. Methods We searched Google, Yahoo, and Bing for “pulmonary arterial hypertension” and screened the first 200 sites from each search engine. Website quality was evaluated by two authors using the validated DISCERN tool (best score is 80) and the Journal of the American Medical Association (JAMA) benchmark criteria (best score is 4). Content accuracy was assessed according to 39 prespecified disease-relevant topics from international PAH guidelines. Linear regression models and generalized estimating equations were used to assess the association between website characteristics with JAMA benchmark criteria, DISCERN scores, and content scores. Results One hundred seventeen eligible sites were included (50% scientific organizations, 20% foundation and/or advocacy organizations, 14% industry or for-profit, 12% personal commentary or blogs, and 4% news and media sites), with most sites hosted in North America. The median time since last website update was 1.2 years (interquartile range [IQR], 0.4–2.6). Website readability was at the high school or college education level (Flesh Reading Ease score 39.9 ± 15.2; reading grade, 11.9 ± 2.7), which is more challenging than the recommendation by the American Medical Association for patient medical information to be written at fifth- to sixth-grade levels. Only 23% had Health on the Net Code of Conduct certification for ethical presentation of healthcare information. The median DISCERN total score and JAMA benchmark score were 29.5 (IQR, 22.5–35.5) and 1.5 (IQR, 0.5–2.5), respectively, indicating poor transparency, reliability, and quality of information. Foundation/advocacy organization sites had higher DISCERN scores than personal commentary/blog sites and higher content scores than industry/for-profit sites. Websites with Health on the Net Code of Conduct certification were more reliable and had higher JAMA benchmark scores. A minority of websites addressed exercise/rehabilitation, palliative care, pregnancy, and financial concerns relevant to patients. Conclusions Most internet websites on PAH were not easily readable, comprehensive, or transparent. Using a systematic appraisal approach, we identified the highest-quality internet websites with balanced and accurate coverage of relevant issues and treatment options for patients with PAH, which may be useful for patients, caregivers, and clinicians.
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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 | 0.110 | 0.429 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.005 | 0.006 |
| Bibliometrics | 0.017 | 0.014 |
| Science and technology studies | 0.001 | 0.002 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.002 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".