A Systematic Evaluation of the Quality, Accuracy, and Reliability of Internet Websites about Pulmonary Arterial Hypertension

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 toot (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.