The Content and Quality of Publicly Available Information About Congenital Diaphragmatic Hernia: Descriptive Study

BACKGROUND: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unable to absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decision making. OBJECTIVE: We aimed to examine the content and quality of publicly available, internet-based CDH information. METHODS: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if they contained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders (FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics were performed. RESULTS: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDH information including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction (79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91, 23%). CONCLUSIONS: Findings highlight the variability of information about CDH on the internet. Clinicians should work to develop or identify reliable, comprehensive information about CDH to support parents.