Internet-Derived Information on Cleft Lip and Palate for Families with Affected Children

Abstract

Objective: To investigate the nature and readability of cleft lip and palate–related family information on the Internet. Materials and Methods: An Internet search for “cleft lip,” “cleft palate,” and “family information” was carried out using three search engines. Within each search, the first 25 relevant websites identified were downloaded and assessed for country of origin, authorship, domain, referencing, links, advertising, mention of orthodontics, illustrations, cleft-specificity, and content. Readability was determined using the Flesch Reading Ease Score, the Flesch-Kincaid Grade Level, and the Fog Scale Level. Data were analyzed by simple descriptive statistics. Results: The initial search returned in excess of 1,800,000 hits. A total of 49 websites were evaluated, excluding repetitions, with a wide range of information available. The websites assessed were mostly of U.S. origin, with a .org domain, authored by universities/hospitals, not cleft-specific, without advertisements, contained links but not references, mentioned orthodontics even if to a small extent, contained some form of illustrations, and varied greatly in quantity and quality of information presented. A wide range of readability scores was obtained, equating to reading ages from fourth grade to university graduate level, with a mean reading age at the eighth to ninth grade level. Conclusions: Cleft lip and palate–related information for families on the Internet is variable in content, quality, and readability. Clinicians should have the responsibility to guide and help parents with website retrieval, while authors of websites should aim to keep information readable and relevant to family demands.