Objective: A comprehensive website review was conducted to assess the quality, content and readability of online information for teens with sickle cell anemia (SCA).
Methods. Key words relevant to SCA were searched across the five most commonly used search engine domains. Websites that contained information about the diagnosis and management of SCA were reviewed. Quality of the information was appraised using the validated DISCERN tool. Two physicians rated website content completeness and accuracy independently. Readability of the sites was documented using SMOG scores and the Flesch Reading ease scoring system.
Results. Search results yielded more than 600 sites of which 25 websites met the criteria for DISCERN quality review. The majority of sites targeted parents and only 5/25 (20%) were specific to teens with SCA. The overall quality of the website information was "fair", with the average DISCERN quality rating score being 50.1 (± 9.3, range 31.0-67.5). Only 12/25(48%)of the websites had DISCERN scores above 50 (mean 57.37 + 4.93, range 52.17-67.50). The average completeness score of the sites was 20 out of 29 (±5; range 12-27) and accuracy was consistently rated 4/4, indicating high accuracy with moderate completeness. The average SMOG score was 12.44 (±2.01; range 10.21-16.08), and the mean Flesch Reading Ease score was 46.45 (±13.22; range 17.50-66.10) indicating that the material was written well above the acceptable level for patient education materials.
Conclusion. Given the paucity of high quality Internet health information at an appropriate reading level for teens with SCA, there is a critical need for the development of Internet programs to meet their unique self-management needs.
No relevant conflicts of interest to declare.