Web-Based Educational Resources for Patients with Sickle Cell Disease: Availability and Reliability.

PURPOSE

Arabic is the primary language used in the Middle East, where sickle cell disease (SCD) is prevalent. This study aims to quantify Arabic web educational materials for patients with SCD and provide a descriptive standardized assessment.

METHODS AND MATERIALS

This retrospective, descriptive study aimed to analyze Arabic websites on SCD through the Discern instrument and JAMA benchmark.

RESULTS

We evaluated the quality and reliability of 27 Arabic SCD-related websites. Regarding website content, all 27 (100%) defined sickle cell disease, whereas 25 (96.30%) and 24 (92.59%) illustrated its manifestations and treatments, respectively. However, only 12 (44.44%) discussed the prevention of the disease through premarital genetic screening and counseling. According to the Discern score, 11 (40.74%) websites were of low quality, while 16 (59.26%) were of moderate quality. On the other hand, the JAMA score reveals that only 2 (7.41%) websites were high reliability, while the majority 25 (92.59%) were low reliability. Additionally, analysis revealed a weak positive correlation between the Discern and JAMA scores (correlation coefficient of 0.19). There were no statistically significant differences in the Discern and JAMA scores between websites on the first page of the search results and those on other pages ( = 0.941 and 0.359, respectively).

CONCLUSION

Empowering patients with comprehensive knowledge about various disease aspects is a pivotal component in the effective management of SCD and, consequently, improving its outcomes. Regrettably, there is a notable scarcity of credible and high-quality written web-based health resources available in Arabic despite significant advancements in other clinical aspects of SCD. Augmenting the existing online resources in Arabic patients' native language could yield substantial enhancements in patient care across various dimensions.