Empowerment of Parents of Children With Cleft Lip and Palate by Objective Scoring of Patient Information Websites

Background: Whether a new diagnosis or for ongoing care, the Internet is now an established and massively frequented resource for parents and patients with cleft lip and/or palate. The purpose of this study was to assess the correlation between the first 50 ranked websites for cleft lip and palate via the Google search engine versus those ranked with an objective patient information scoring tool.

Methods: The first 50 websites ranked by Google were recorded for the search items "Cleft Lip," "Cleft Palate" and "Cleft Lip and Palate." Quality assessment was performed using the DISCERN score, an objective and validated patient information website scoring tool. The Google rank was compared to the DISCERN rank to assess for correlation. The top five websites for each search item were then ranked by blinded cleft health professionals for quality.

Results: Based on Google ranking, 36% of websites were the same across the search terms used. The DISCERN ranking scores demonstrated no evidence of positive or negative correlation when compared to Google ranking. In the top 10 DISCERN ranked websites for each search item, 4 websites appear in the top 10 Google rankings.

Conclusion: This is the first study that demonstrates that high-quality information on cleft lip and palate is available on the Internet. However, this may be difficult and confusing for parents and patients to access due to the ranking system used by internet search engines. Cleft healthcare professionals should be aware of these problems when recommending websites to families and patients.