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An Analysis Of 53 Craniofacial Center Websites: Craniosynostosis Families Are Being Given Inaccurate, Vague, And Inconsistent Information
jeffrey goldstein, MD, Vivian Buchanan, PA-C, Michael Lypka, DMD/MD, Amanda Johnston, APRN.
Children's Mercy Hospital, kansas city, MO, USA.

PURPOSE: Craniofacial center websites are an early and significant source of education for parents. The aims of this presentation are to analyze the answers given by these websites to selected questions about craniosynostosis, and to assess the variability and accuracy of these answers.
METHODS: The internet search-phrases “craniosynostosis,” “craniofacial center,” and “craniosynostosis center” were employed . The first 30 teams for each search were chosen, leading to 53 center websites after accounting for duplications. The websites were reviewed. Answers to select questions were recorded and assessed.
RESULTS: Answers to questions were highly variable between websites with disparate statements noted, including:1. 13% of websites state that surgery is required for all craniosynostoses.
2. 14% of websites state that if untreated, craniosynostosis mostly or always leads to developmental delay.
3. 95% of websites state there’s a combined plastic surgical-neurosurgical team approach. 5% are neurosurgeons working alone.
4. 22% of websites only mention open surgical correction. No sites exclusively mention endoscopic techniques.
5. The maximum age for endoscopic surgery is less than 3 months for 50% of sites, 3-6 months by 44%, and 8 months by 6% of websites .
6. 51% of websites obtain CT-scans routinely. 4% of centers do not routinely scan. 44% do not mention CTs
7. 76% of websites do not address if blood transfusion is required. 4% of centers claim transfusion is only required for an open approach.
CONCLUSIONS: The most search-engine-optimized craniofacial center websites often are not comprehensive and provide inaccurate and variable information to families.


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