The Quality and Accuracy of Hemophilia Information on the Internet.

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.