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

Dalal Mahmoud Alabdulmohsen1, Sarah Khalid Alfuhaydi2, Abdullah Mohamed Al Saloum3

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Summary

This study assessed Arabic websites for sickle cell disease (SCD) patients. Most sites lacked information on prevention and were of low reliability, indicating a need for better Arabic SCD educational resources.

Keywords:
Arabic languageeducationsickle cell disease

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Area of Science:

  • Medical Informatics
  • Public Health
  • Genetics

Background:

  • Sickle cell disease (SCD) is prevalent in the Middle East, where Arabic is the primary language.
  • Effective patient management and improved outcomes rely on comprehensive health education.
  • There's a recognized deficiency in high-quality, credible Arabic online health resources for SCD patients.

Purpose of the Study:

  • To quantify and assess the quality of Arabic web-based educational materials for sickle cell disease (SCD) patients.
  • To provide a standardized evaluation of existing online resources.
  • To identify gaps in information, particularly regarding disease prevention.

Main Methods:

  • A retrospective, descriptive study analyzing 27 Arabic websites related to SCD.
  • Utilized the Discern instrument and JAMA benchmark for quality and reliability assessment.
  • Evaluated website content, including disease definition, manifestations, treatments, and prevention strategies.

Main Results:

  • All websites defined SCD, but only 44.44% discussed prevention (premarital screening/counseling).
  • 11 websites (40.74%) were low quality (Discern score), and 25 (92.59%) were low reliability (JAMA score).
  • A weak positive correlation (0.19) was found between Discern and JAMA scores; no significant difference in scores based on search result page.

Conclusions:

  • A significant scarcity of high-quality, reliable Arabic online resources for SCD patients exists.
  • Existing websites often lack crucial information on disease prevention.
  • Enhancing Arabic online educational content is vital for improving patient care and outcomes in SCD management.